October 22, 2024 • 56 mins
Hey, Fellow Travelers. When Savannah first met her husband, she knew he had a chronic illness but didn't think it would affect their lives as a young couple in love. But soon after she and her husband married, his symptoms got worse, and now she struggles to be both his caregiver and wife. We help Savannah get the support she needs and initiate the hard, honest conversations that she and her husband had both been avoiding.
We're going on hiatus to get ready to bring you a brand new season of DEAR THERAPISTS. Until then, take care of yourselves, and don't forget to catch up on any episodes you may have missed!
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:04):
Hey, fellow travelers. I'm Lori Gottlieb.
Speaker 2 (00:07):
I'm the author of Maybe You Should Talk to Someone,
and I write the Dear Therapist column for the Atlantic.
Speaker 3 (00:11):
And I'm Guy Wench. I wrote Emotional First Aid, and
I write the Dear Guy column for Ted. And this
is Deo Therapists.
Speaker 2 (00:19):
This week, a young woman struggles to find a balance
between taking care of her own needs and caring for
her husband, whose chronic illness is taking a toll on
their marriage.
Speaker 4 (00:28):
We got married, we were in this together. I'm definitely
scared that our marriage could fall apart. I just don't
know what to do without making it like this is
his problem.
Speaker 2 (00:38):
Listen in and maybe learn something about yourself and the process.
Speaker 3 (00:48):
Deo Therapist is for informational purposes only, does not constitute
medical advice, and is not a substitute for professional medical advice, diagnosis,
or treatment. Always seek the advice of your physician, mental
health professional, or other qualified health provider with any questions
you may have regarding a medical condition. By submitting a letter,
you are agreeing to let iHeartMedia use it in Potter
(01:09):
and Full and we may edit it for lengthen or clarity.
Hi Guy, Hey, Laurie.
Speaker 1 (01:16):
So I can't believe it.
Speaker 2 (01:17):
But here we are wrapping up our very first season
of Dear Therapists.
Speaker 1 (01:22):
It feels like it has just flown by.
Speaker 3 (01:25):
It really does. And when I think of all the
topics that we've covered, and all the lovely people that
we've spoken to, and all the emails from people telling
us how much they took away from each episode, it's
been quite a journey.
Speaker 2 (01:42):
And what I love the most is when people write
and say that even though they haven't found themselves in
exactly the same situation, that they've taken our advice and
applied it to their lives in different ways.
Speaker 1 (01:54):
And that's what we're trying to do here.
Speaker 2 (01:56):
And because we think about our last episode of the
season in we wanted to choose a letter that really
reflected twenty twenty.
Speaker 3 (02:05):
Yeah, and for us, and I think for many many people,
twenty twenty was about being able to care for yourself
even as we're caring for one another, and finding that.
Speaker 1 (02:16):
Balance that's right.
Speaker 2 (02:18):
And so this week we have a letter about a
really common relationship dynamic that people don't talk about enough,
and it has to do with what happens when somebody
in the relationship needs care and the other person has
to be both the partner and the caregiver.
Speaker 1 (02:35):
So here's how the letter goes.
Speaker 2 (02:37):
Dear therapists, my husband said has sickle cell disease, and
over the past three years, it seems like the pain
keeps getting worse, lasts longer, and he's out of it
for more days each week. Medically speaking, he's in pretty
decent shape. His blood work is good for his condition,
so there isn't much the doctors can do as it
gets worse and worse. It's really affecting our marriage emotionally,
(02:58):
financially and physical. I sometimes feel like more of a
nurse than a wife, and I try really hard not
to put any additional stress on him, hoping that if
he doesn't have to deal with the usual stressors of life,
that he'll get better faster. This in turn, puts a
lot more pressure on me, so I feel like a
stressed out mess a lot of the time. It's gotten
so bad that I'm terrified about what the future will
(03:19):
look like. I'm also afraid that once he does start
to feel better, I'm just going to be waiting for
the other shoe to drop. I feel like i'm sabotaging
our marriage because I'm not sure how much more I
can handle. Do you have any suggestions about how to
manage the situation? Thanks Savannah.
Speaker 3 (03:35):
Sickle cell disease is a blood disorder that causes your
body to make an unusual form of hemoglobin and that
has all kinds of impacts. It creates anemia blockage, but
the biggest symptom is these crises of pain that can
be short or long and intense. The pain can be
(03:55):
very severe, and it's the biggest part of sickle cell
that people tend to deal with. It's hereditary, it's life long.
To be a caretaker in a relationship, in a marriage
is very difficult because you have to juggle the needs
of the quote unquote patient with the emotional needs of
each of the individuals, with the needs of the relationship
(04:17):
and of the couplehood. And is a lot to juggle
for one person. And usually the person who is put
lost on the list is the caretaker in terms of
taking care of their own needs.
Speaker 2 (04:28):
And not only is that person last on the list,
but they feel guilty for having any needs. They feel like,
I can't have any needs because this other person's needs
are so much more significant than mine. And so the
daily things that come up in a marriage, the daily
things that come up in a person's life, They feel like,
I don't want to burden my partner with this, and
yet that's the stuff of marriage. And so we want
(04:50):
to find out a little bit about how that got lost.
And I think there's another aspect to this, which is
the fear that sometimes people can't talk about, like the
hard things. Is this person's life expectancy going to be shortened?
Am I going to be left alone? Is this person
going to die? Is this person going to have this
acute pain crisis? That is really hard for me to
(05:12):
watch because I love this person so much and it scares.
Speaker 1 (05:15):
Me when I see this.
Speaker 2 (05:17):
And sometimes the caregiver partner feels like I can't talk
about my feelings about this with anyone. I don't want
to alarm the person that I'm feeling this way. And
what gets lost in all of this is that there's
still a married couple. So how do they bring the
marriage aspect of this, some normalcy into a situation that
(05:38):
isn't quite normal.
Speaker 3 (05:40):
Yeah, there's a lot we need to find out here.
Let's go talk to her. You're listening to Deal Therapists
from iHeartRadio. We'll be back after a quick break.
Speaker 1 (05:57):
I'm Lori Gottlieb and I'm.
Speaker 3 (05:58):
Guy Wench and this Therapists.
Speaker 1 (06:02):
Well, Hi Savannah, Hi, how are you good?
Speaker 3 (06:05):
And welcome to the show.
Speaker 5 (06:06):
Thanks for having me.
Speaker 3 (06:07):
So, Savannah, we read you Aletta, and we chose it
because it's such a common situation for somebody and a
couple to require caretaking for a medical condition. But we
wanted to stop by maybe getting a little bit of
history about you and the marriage.
Speaker 4 (06:21):
Yeah, so we met about eight years ago through friends
of friends.
Speaker 5 (06:26):
We were going to the same club, just on an outing.
Speaker 4 (06:30):
One thing led to another and we are have now
been married for over three years.
Speaker 2 (06:37):
When you first met, had he been diagnosed with sickle
cell disease? Usually people are diagnosed in childhood.
Speaker 4 (06:44):
Yeah, he knew, His parents knew before he was born,
so he grew up with it.
Speaker 2 (06:49):
And what was your reaction when you found out? Did
you understand what that meant?
Speaker 5 (06:58):
I don't think I understood the gravity of it.
Speaker 4 (07:00):
It took a while for him to tell me that
that was the case, and I remember googling, you know,
just to understand more about what it is and it
was so irrelevant in the beginning, Like he just seemed
like such a normal person who did everything that his
friends did. We went out and hung out and drank,
(07:21):
you know, we'd normal like twenty five year olds, and
he was in.
Speaker 5 (07:25):
Law school at the time and that's not an easy
thing to do.
Speaker 4 (07:28):
So yeah, it just didn't even cross my mind that
it would become anything bigger than what it was.
Speaker 3 (07:35):
And when did it stop becoming a thing?
Speaker 4 (07:37):
So right after we got married, we moved to Seattle,
and it was a couple months after that that it
just became this thing, like every day where he was
in pain, and then he would be taking more and
more medication and that would lead him not to be
able to like get through the day because he was
so out of it. And so for the last almost
(07:59):
three years, it's been a pretty consistent thing. We moved
in together about two years before we got married. I
remember thinking at the time that it was definitely worse
than what I had initially expected when we weren't living together,
but not nearly as bad. It was the minor pain
(08:21):
that was here and there that I started to see
that I never used to see before.
Speaker 5 (08:25):
But it wasn't debilitating.
Speaker 2 (08:26):
It just was there when you started to see some
of the symptoms when you moved in together. Did you
ever at any moment think I'm worried about what this
could become or I'm worried about marrying this person.
Speaker 5 (08:40):
No.
Speaker 4 (08:41):
I only thought about it as like I'm worried about
the impact that it has on his life. I never
really thought about it in relation to myself.
Speaker 3 (08:53):
When did you stop thinking about it in relation to you?
Speaker 5 (08:57):
Probably within the last year.
Speaker 4 (09:00):
He had moved out of Seattle to la thinking that
the weather would make things better and get back to
sort of normal or as normal as can be. That
year that we were in Seattle, it was sort of
like just learning about it being bad and seeing how
it happened, and then focusing so much time on getting
(09:21):
out of there. And then the last couple of years
in LA I think over the last year is sort
of where I started to see it affecting me more
and more.
Speaker 3 (09:33):
And what's his level of functioning He was in law school?
Is he working now?
Speaker 4 (09:36):
He has his own business so he can make up
his own hours. He really loves that, and that's what
he's really passionate about. But I don't think he would
be able to have a corporate job at this point,
and he did so.
Speaker 5 (09:51):
Right after law school, he did.
Speaker 4 (09:52):
Have a corporate job and it was fine, But today
I don't think it's possible.
Speaker 2 (10:00):
Can you take us through a typical day of what
your life is like now and.
Speaker 1 (10:04):
What the two of you do, and how old are
you both?
Speaker 4 (10:07):
We are both thirty three. I'll wake up around probably seven.
He's usually asleep until I would say ten or eleven,
and I'll just start my day. I have a full
time job, so I'll work throughout the day and he'll
wake up later, and he will try and work and
get through his day.
Speaker 5 (10:26):
Sometimes he can.
Speaker 4 (10:27):
And then when I'm finished, we'll hang out, I'll cook dinner,
we'll spend some time together.
Speaker 5 (10:35):
And then as I am ready.
Speaker 4 (10:38):
To go to bed, he's like awaken in pain and
working through something or watching a movie, sort of trying
to get his mind off of it. And then if
it's really bad, sometimes he'll wake me up in the
middle of the night.
Speaker 5 (10:49):
Because he's been up for so long.
Speaker 4 (10:50):
If he's like starving and needs a snack or something
and he can't get downstairs, then he'll ask me for help.
Or sometimes he'll like wake me up just from sort
of like almost like a panic attack, just for like
a hug or something to bring him down, and then
we kind of startle over again. Whenever we try and
(11:10):
go see friends, I never expect that he will come.
Speaker 5 (11:13):
It's always up in the air.
Speaker 4 (11:15):
Or if we have an activity planned, we have to
make sure that it's not too late in the evening,
or like sometimes we have to make sure that we
can cancel things just because we know that it may
or may not happen.
Speaker 2 (11:26):
How has the community around you, your circle of friends
responded to what's going on.
Speaker 4 (11:33):
Most of my friends are still in New York, so
whenever I go home, they don't usually think that he'll
be there with me, and they're supportive as they can
be sort of from a distance.
Speaker 5 (11:44):
Same with both of our parents. And then I.
Speaker 4 (11:46):
Think, here we don't really have close enough friends to
be able to have that conversation with them. My job
definitely knows what's going on, and so if I need
to take the time, they're very flexible and supportive as
much as possible.
Speaker 3 (12:01):
Do you have a sense in terms of the disease
progression where he's at, what his prognosis is?
Speaker 4 (12:07):
Yeah, not at all the doctors don't really know, and
there's a lot of new medications coming out and new therapies,
so I think it's sort of changing. It's not really
something that we've talked about deeply. It has been a
hard conversation to talk about options because he very strongly
(12:29):
believes that it's entirely his decision.
Speaker 5 (12:32):
And that's, you know, rightfully, So.
Speaker 4 (12:34):
What is his decision whether or not to explore any
new medications, whether or not to explore any new therapies
things like that? Sometimes like I think he sort of
should be doing more.
Speaker 1 (12:48):
What do you think he should be doing?
Speaker 4 (12:51):
Well, there are a couple of new therapies and I
think he should explore them further. There was this one
supplement that his doctor recommended that's supposed to help, but
it hasn't been taking it in the quantity that he's
supposed to be and so it wasn't really helping.
Speaker 1 (13:08):
Do you know why he wasn't taking it?
Speaker 3 (13:10):
And I don't.
Speaker 5 (13:11):
I try to understand, and I just I don't.
Speaker 2 (13:16):
So what happens when you ask him?
Speaker 4 (13:22):
He kind of brushes it off and just says that
he will or he forgets or something.
Speaker 5 (13:26):
And then I try and remind him any things.
Speaker 4 (13:28):
I'm putting too much emphasis onto this supplement, and it's
supposed to.
Speaker 5 (13:32):
Have some benefits for sickle cell patients.
Speaker 2 (13:36):
You know what I'm hearing is that when you say
he brushes it off, I think you both brush it off,
because what happens is you're talking about take the supplement,
don't take the supplement, as opposed to what's going on
emotionally for both of you. It's so much easier. By
the way, it's very common for people, especially in this situation,
to say, let's talk about treatment options, and let's talk
(13:57):
about your pain, and let me get you a snack
in the middle of the night, as opposed to what
is this experience like for us, not only as a
married couple, but as a young married couple, because there's
something so isolating anyway for a caregiver in any situation.
Often the caregiver is the last person whose needs are
attended to. But when you're a young couple and you
(14:19):
watch all the other couples your age, I think that
most of what you see as people in their early
thirties going through early stages of marriage, maybe having children,
lots of career stuff going on, and you guys have
this other layer that's also there, and so there's a
sense of isolation. And what happens is it gets translated
(14:42):
into the couple. So when he doesn't take the supplement
and you say how come you didn't take the supplement,
you do come across to him as sort of a
parental figure as opposed to a partner. For you, you
say to yourself, I'm really worried about this. He has
this option here that I think might help him, and
I get really frustrated and angry that he doesn't want
(15:04):
to do it, and you don't say that to him.
And what he doesn't say to you is I don't
want to take the supplement because and I wonder why
you both are avoiding in some way having the conversations,
not about the what, but about the why.
Speaker 4 (15:20):
Yeah, it's hard for me because a few times that
we have tried to have this conversation, we end up
in a fight, and I would just rather not bring
it up than end up fighting about it again.
Speaker 3 (15:29):
Savannah, how much is it clear for the two of
you that the sickle cell impacts you very much as well?
Have you told him the extent of the effect that
it has on you?
Speaker 5 (15:44):
I think so. I actually I don't know.
Speaker 3 (15:49):
Tell us about an attempt to try and explain to
him how it's impacting you.
Speaker 4 (15:56):
I guess if you put it that way, I don't
think I have done a very good job in trying too.
It sort of comes out in other parts of conversations.
I think the one time that's very clear is he
sort of asked me how much of it was me
wanting him to get better versus how much me needing
him to get better for our sake, on like a
(16:17):
scale from zero to one hundred, and I think I
said it was probably like eighty to ninety percent wanting
him to get better for him, and then the rest
they're like ten to twenty probably for us.
Speaker 2 (16:28):
Why only ten to twenty for the two of you?
I think implicit in his question was how much do
you care about me? How much do you love me?
And I think that somehow in his mind, and again
I want to really emphasize that just in his mind,
is that he thinks that if you give a high
percentage to how much do you want me to get
(16:49):
better for the sake of our marriage, that somehow that
makes him less important to you.
Speaker 5 (16:54):
That sounds right or you don't.
Speaker 2 (16:56):
Empathize as well as you should. This happens a lot
with couples where somebody is really thrust into the role
of caretaker, where you forget that you're still a married couple, right,
and so this does impact both of you, and it
should because you are a couple.
Speaker 3 (17:19):
Yeah.
Speaker 4 (17:19):
I think the way that I'd interpreted that question was like,
if we were to say split up, would I still
want him to get better?
Speaker 5 (17:29):
And of course I would.
Speaker 4 (17:31):
You know, I wouldn't wish that on anyone, especially somebody
who I loved, And even if you know there was
something that we couldn't reconcile, like, I would still want
it for him.
Speaker 2 (17:40):
Does he worry that you might not stick around if
this gets worse?
Speaker 4 (17:46):
I think he thinks that it could be too much
for me, Like there is a possibility that it gets
to a point where I just can't handle it anymore.
Speaker 2 (17:54):
Has he actually said that to you or is that
something that you're thinking he thinks it before?
Speaker 3 (18:02):
Because I think that that question actually was a fear
on the one hand, and on the other hand, giving
you an opportunity to open the door and say, yes,
I want you to get better, but I also want
to talk about what it's doing to us. In other words,
I do think that he might be fishing a little
bit for you to bring up your part of this
(18:25):
more than you've been willing to do. And I know
that a lot of people when they're in his situation
really go between feeling I need this help and feeling
guilt on the one hand, and then feeling like, but
if she tells me this is really hard for her,
that'll really be too much for me. I want to know,
but I don't want to hear it kind of feeling.
And I'm wondering if he's in that boat a little bit.
Speaker 5 (18:46):
Yeah, that definitely sounds possible.
Speaker 3 (18:50):
So then you're sparing him by not wanting to burden
him by telling him how much it's impacting you. And
I'm just not sure that, given what you wrote and
how you're feeling, whether that's manageable for much longer for you.
I'm not sure you have the option to spare him
that for much longer. And this is in part why
(19:13):
you wrote to us being able to talk to him
more about Look, this is really hard for me, and
I need us to talk. How much you there, I
don't know, you don't know if you're ready for that,
what's your fear.
Speaker 4 (19:31):
I'm definitely scared that our marriage could fall apart, and
I certainly don't want it to.
Speaker 5 (19:37):
I just don't know what to do.
Speaker 4 (19:40):
That will help both of us without making it like
this is his problem, because I don't want it to
feel that way. Right Like we got married, we were
in this together. I just want to know what more
either I can do or both of us can do
in order to have it be something that isn't sort
(20:00):
of always in everything.
Speaker 2 (20:04):
It is in everything in the sense of this is
going on and it doesn't go away, and nobody gets
a night off from the fact that he has.
Speaker 1 (20:11):
Sickle cell disease.
Speaker 2 (20:13):
But what's also going on at the same time that's
not going away is you, guys are a couple, and
so the thing that's going to be helpful for the
two of you is what is the nature of the
connection between you guys as a married couple, even though
you have this challenge in your marriage. And I say
challenge in your marriage because it's a challenge for both
(20:34):
of you. Yes, he suffers more. He has the excruciating
pain he has, the anemia and the fatigue he has,
and I don't know if you two have talked about
this a shortened life expectancy, and so, how do you
talk about the fact that there's a lot going on
in your marriage that's unrelated to this? I hope, but
(20:54):
I don't know how much is. And then this is
also happening, and I think it's taking up so much
much space because no one's talking about it. Usually the
things that we don't talk about because we feel like
they're going to take up so much space, we actually
make them take up more space by not talking about them.
You know that line when you get married in sickness
(21:15):
and in health. That line was especially relevant.
Speaker 1 (21:18):
To the two of you.
Speaker 2 (21:21):
When you think about how you imagined your marriage would
go at the moment that you recited those vows versus
how it's going now.
Speaker 1 (21:29):
Can you tell me what the difference is?
Speaker 4 (21:33):
In my mind, it was we're already doing the sickness thing,
and it's fine. We both sort of make these sacrifices
here and there, right Like he misses out on things
because he feels it, and then I will miss out
on things like let's say we've had plans to go somewhere,
then I'll just you know, I'll miss out occasionally, but
(21:53):
then I can be with him and support him. The
flip side is if I really wanted to do something
or go somewhere or whatever without him, He's not the
kind of person.
Speaker 5 (22:02):
Who will ask me to stay.
Speaker 4 (22:04):
He'll tell me to go and you know, do what
I wanted to do, and he'll just deal with it
on his own. And that's kind of what I expected, Like,
that's sort of what we were doing before, and that's
what I anticipated the future would be like.
Speaker 2 (22:19):
When you did your research on sickle cell disease, one
of the things that's very much out there is what
the symptoms are, what they can become. And again this
question of average life expectancy, which I think for sickle
cell disease is quite young.
Speaker 1 (22:38):
Did you google that?
Speaker 4 (22:40):
I did, but it was like, well, that's everyone else,
that's not him. I think he said that it runs
in his family, and so he's had other families who
have lived full lives and till they were much older,
and so he's not really worried about this shortened life span.
Speaker 5 (23:00):
So I shouldn't worry about the shortened life span.
Speaker 3 (23:04):
You mentioned earlier that you're worried that talking to him
about things in terms of how they impact you and
the marriage might cause things to unravel and cause a
big fight. Now, you seem to love him, you seem
to want to figure it out. In fact, you seem
a little too much to want to figure it out
by yourself really without him as much, and to spare
(23:26):
him more. But you seem to be worried that he's
going to have the bad reaction to that conversation. He's
going to have a difficult time talking about how this
impacts you, perhaps how this impacts the marriage. Why are
you worried about that? What have you heard from him
that indicates that he will have a hard time having
that kind of conversation To give space for your experience
(23:52):
side by side with his.
Speaker 4 (23:53):
I think it's like the stress of the conversation puts
his body into and that causes sickle cell pain.
Speaker 3 (24:03):
How quickly, immediately as soon as you start the conversation.
Speaker 5 (24:06):
No, just as it goes on.
Speaker 4 (24:07):
And if it sort of doesn't go well, then it
could be a night where he doesn't sleep or he's
in so much pain he just has to keep taking medication,
and then he doesn't sleep or does sleep throughout like
half the next day and so the effect is so
big that it's hard sometimes to bring it up. I'm
(24:29):
not afraid of what he'll say, I'm afraid of what
reaction his body will have.
Speaker 3 (24:35):
That means you're afraid to discuss any difficult.
Speaker 4 (24:38):
Topic with him, Yeah, I mean having really difficult conversations,
like I have to think about it and figure out
how to bring it up. Sometimes we have to stop
and take a break and try and bring it up
again at a later time.
Speaker 2 (24:50):
Because what happens in that moment where you feel like
we need to revisit this later.
Speaker 1 (24:56):
Are you guys arguing with each other? What happened?
Speaker 4 (25:00):
We don't really raise our voices all that much. It's
not really how we fight. We sort of just like
we can't get through to each other. We can't explain
things in a way that the other person understands, and
so we just end up talking in circles and it
it just gets frustrating.
Speaker 2 (25:16):
You're worried about talking about anything that might upset him
because not only will it potentially hurt him emotionally, but
it could hurt him.
Speaker 1 (25:23):
Physically, which.
Speaker 2 (25:27):
Makes it impossible for you to have any space at
all emotionally in the couple. I don't know that you
guys can get closer if you're living in your own silos.
He's experiencing what he's experiencing. You're experiencing what you're experiencing.
(25:53):
But nobody's talking about not only what's going on in
the present, but what might happen in the future.
Speaker 1 (26:00):
Talk about it.
Speaker 2 (26:00):
Before you got married, there was this reasurance from him, well,
everybody in my family does well with this disease, so
it's going to be okay. And you said, I guess
it'll be okay. I don't know if you ever thought
about having kids. Did you guys think about that?
Speaker 5 (26:13):
We also sort of table that.
Speaker 4 (26:17):
I mean, neither one of us was sure, you know,
a couple of years ago, and I think we're just
trying to figure it out if that's something that we
want to do.
Speaker 5 (26:26):
In this moment. I don't know that we can give
in sort of everything.
Speaker 2 (26:32):
I want to ask a different question, not whether you can,
but I want to know what it is that you want.
Speaker 5 (26:42):
I don't know. I truly didn't know a few years ago.
Speaker 4 (26:48):
I think now I'm getting to the point where like, yes,
I think I do you do what?
Speaker 3 (26:54):
Yeah, yeah, something that's happening Savannah, is that whatever you
used to thinking about your needs and your feelings, sickle
cell jumps into that frame and blocks you from pursuing
it because I need to talk to him, but oh,
that'll put him in pain. I think I want kids,
(27:16):
but that'll be a lot to talk to him about.
Right now, I'm feeling that there's not enough space for
me and my feelings in this, but I can't voice
that because we'll get into an argument. And I think
that fear is a short term fear, because the fear
is it'll make him feel bad that night. But right now,
what's accumulating is all the stresses of where is she at,
(27:37):
because I don't know how she's, what she's feeling, and
whether she wants to be in this.
Speaker 2 (27:42):
The thing about a chronic illness is that it flares
up sometimes and then things seem sort of normalish sometimes,
and you don't want to get too hopeful in the
normal moments because your guard is down, and then when
the pain starts again, then you're just drawn right back
into it. But it feels harder in some ways because
(28:03):
you had your hopes up. It sounds like you're just
in constant survival mode. That you're not really living because
you're just trying to survive. And the part that's missing
in this marriage right now is that you are a
young married couple, and yes, there's this big challenge that
(28:25):
you have, but there's so much more to this marriage
than that, and there's no room at all for that.
It's like, let's be careful about what we talk about.
Let me not burden him with what's going on in
my day. My concern about what happened with my boss
or my job or my friend might seem irrelevant to him.
So you're not really connecting at all. And there's so
(28:46):
much fear of talking about what's already looming so large
between you. It's not like because you're not talking about it,
it's not there. It's so there, things like I think
I want to have kids. It's things like I worry
about the progression of this disease. Can we talk about
what happens if something happens where you do get very
(29:09):
ill at one point, we might want to get a
caregiver for you. Can we talk about how we talk
about decisions around your care and where we can have
discussions about it, even if ultimately it's your decision. Can
we talk about why you don't want to take the supplements.
I just want to understand how you think and feel
(29:30):
about these things. Can we talk about what happens at
the doctor and who's in those meetings and discussions, and
then can we also talk about how we can have
some normalcy in our marriage?
Speaker 1 (29:43):
Right?
Speaker 2 (29:44):
Are you guys having sex? Are you having any kind
of intimacy with each other? Are you socializing with people
when he's feeling up to it? What do you do
to have fun together? Do you have any movie nights
or date nights knowing that it might get canceled?
Speaker 3 (30:00):
Actually, I want the answers to all those questions. These
are great questions you asked Lorie. Can we pose and
just get some of those answers.
Speaker 4 (30:07):
Yeah, we don't have sex very often since when probably
the last like two years.
Speaker 3 (30:16):
I would say, because he's not up to it.
Speaker 4 (30:22):
I think it's a combo. I think some of it
is that he's not feeling well. I think some of
it is I've just been really tired more over the
last year, I would say, And I think part of
it is I think you hit it on the head
with like we're not really connecting, and so that doesn't
really drive the want to.
Speaker 1 (30:41):
Do you hold hands, do you kiss? Do you hug
each other?
Speaker 2 (30:46):
So what happens when somebody initiates sex and the other
person doesn't want to.
Speaker 5 (30:50):
I think there's just a lack of initiation.
Speaker 1 (30:55):
So nobody's initiating.
Speaker 3 (30:57):
Not often, and I'm assuming you're not talking about it.
Speaker 4 (31:02):
We've tried, that's great, But who I bring it up?
Speaker 3 (31:09):
And what happens in that discussion?
Speaker 4 (31:11):
It usually comes up like at the end of something else.
It's never its own like topic. It's usually a you
know this was wrong, or like there's this or this,
and then also like.
Speaker 5 (31:28):
We're not having sex.
Speaker 2 (31:29):
So that's what we call kitchen sink fighting, where you
kind of throw in everything with the kitchen sink. So
it's like we're fighting about one thing, or we're talking
about one thing, but then let's do this laundry list
of all the other things that I'm upset about that
we haven't talked about.
Speaker 3 (31:43):
But that's not a sincere if it's actually have a discussion, right,
if you just tag it on at the end, he
also understands that he's not going to sit down and Okay,
let's sit down and talk about that now.
Speaker 2 (31:52):
So you've barely had sex for two years. What prevents
you from talking with him about that? You're worried that
it's going to upset him and then he's going to
have a flare up of his symptoms.
Speaker 4 (32:03):
Yeah, I just don't know how to bring it up.
I don't know when to bring it up. I don't
know how to have the conversation. I need to do
something about it, and like that kind of scares me.
Speaker 1 (32:15):
Let me just backtrack for a second.
Speaker 2 (32:17):
If you were in this marriage with Sid and he
didn't have sickle cell disease and you weren't having sex,
how do.
Speaker 1 (32:26):
You think you might bring it up?
Speaker 5 (32:29):
I don't know.
Speaker 2 (32:31):
Right, So, this is what I'm starting to suspect. So
much of what might have been sort of typical marital
issues between the two of you get tossed into this
bucket of well, we can't talk about that because Sid
is sick. But I think that even if he weren't sick,
(32:52):
maybe the two of you don't have the practice talking
about some of these delicate things with each other. It's
so easy to say, well, we're not talking about it
because of what happens with the illness. When we start
talking about things, But a lot of what you're talking
about are actually kind of universal couple's issues. And then
(33:15):
later on top of that is the fact that he's sick,
But things like, how do we talk about our needs
in the relationship? What happens when one person's needs seem
to be bigger or there isn't really space for the
other person's needs. What happens when we have differences of
opinion about things big things in the marriage, What happens
when the intimacy declines because we're not connecting. Any couple
(33:41):
listening to this is probably nodding right now saying, oh, yeah,
those issues are really common. But when you start to
make the excuse that we're not talking about that because
of Sid's illness, now you have.
Speaker 1 (33:58):
This concrete reason that you can't do it.
Speaker 2 (34:01):
What we're trying to say here is that these parallel
tracks don't need to be so parallel of the illness
and the marriage that they're actually quite intertwined. Every marriage
has its stuff. This marriage happens to have this as
its stuff, but it also has a lot of other
stuff that lots of other marriages have.
Speaker 1 (34:21):
And it's not just that he doesn't want to talk
about it.
Speaker 2 (34:25):
It's that I have trouble talking about it, and so
I want to know what the fear is. If the
illness weren't there, what would be your fear of saying
to your husband, Hey, you know we're not having sex
and I want to talk about that with you.
Speaker 5 (34:43):
I don't know. The first couple of years of our relationship,
we just seem to always be on the same page
about everything, and so it was just easy. Nothing big
ever really came up. I don't know how to bring
it up. I don't know how to say it so
that it doesn't like him.
Speaker 2 (35:02):
You say you were on the same page about everything
in the first couple of years of your relationship, But
there are things that come up when you talk about
the future, things like do we both want kids? You're
both in your thirties. Now, what do you think is
going to happen if you never bring.
Speaker 5 (35:19):
This up, we will never have kids, And what do you.
Speaker 2 (35:24):
Think that's going to do for you in terms of
your future? How do you think you're going to feel
about that later? Knowing that you never brought it up,
so it would be one thing if you brought it up,
you talked about it. You came to some place of
peace with it together. I'm trying to help you think
about what might happen if you never bring it up
and you don't have kids, even though your desire is
(35:45):
to have kids.
Speaker 4 (35:48):
I mean, there's like regret and resentment that would probably happen, you.
Speaker 3 (35:56):
Know, what would happen on his end, which is already happening.
Because people who have illnesses which require their spouse to
be caretakers feel guilty a lot, feel worried and fearful
about their own futures a lot, and sometimes it's so
paralyzing they don't even want to deal with it. But
it's there and it's hovering, and if you don't talk
(36:19):
about it together, then he can't express any of that either.
And I think it's going to be very difficult for
you to talk about kids. It's going to be very
difficult for you to talk about sex. It's going to
be very difficult for you to talk about anything unless
you can first learn to talk about sickle cell in
a very open, matter of fact way. I'm not talking
(36:42):
about just the big discussions or fears about the future.
I mean on the day to day, not just transactionally,
but what the impact is or you can't go to
this thing. You understand it's not his fault, of course,
but it's disappointing. Are you allowed to be upset? Can
you be open about the frustrations that you might feel
in moments like that if he is really fearful, like
what if this just gets worse? What if I can't
(37:03):
do anything? Is he allowed to express that? Are you
allowed to express that that you really need to be
able to talk about the elephant in the room in
a much more open way. Are you willing to do that?
Speaker 4 (37:19):
Yeah, beyond like just wanting to, like, I think we
need to, you know, I think in order to be
able to get to anything else, and as you said,
like you're closer, we have to be able to have
the conversation and address it in a way that's meaningful
for the both of us in order to have a relationship,
(37:40):
and a good one at that.
Speaker 2 (37:42):
Savannah, if you weren't worried about his reaction, and you
were being truly open and honest with yourself about how
you feel about what's going on right now, what would
you say?
Speaker 5 (38:01):
I think that.
Speaker 4 (38:05):
Maybe what it would ultimately feel is that like we
sort of aren't on the same page, you know, he
wants to handle things his way and believes that he
is in full control and he needs to do it
on his own, and he can't really share that.
Speaker 5 (38:26):
And I don't know that I can be in a
place where that part isn't shared.
Speaker 2 (38:37):
Okay, so you want to include it? Can you fill
in these sentences? I'm scared because.
Speaker 5 (38:48):
I'm scared because I think we may end up just
wanting completely different things.
Speaker 1 (39:05):
I'm overwhelmed by.
Speaker 5 (39:10):
I'm overwhelmed by the gravity of our current situation and
having to deal with it.
Speaker 1 (39:24):
I feel alone when.
Speaker 5 (39:28):
I feel alone almost all the time.
Speaker 3 (39:39):
I want to point out that when you feel alone
almost all the time, it is very natural to anticipate
that Sid won't respond well when you talk to him,
because the way you envision those conversations is you end
up alone at the end of them, and if it
(40:01):
could be paralyzing.
Speaker 2 (40:04):
And the other thing is that I think a lot
of young couples aren't forced to talk about the hard
things the way you, as a young couple are, And
on the one hand, that might feel overwhelming, but on
the other hand, it gives you something that other couples
don't have. It allows you to become even more emotionally
(40:28):
intimate in ways that other couples your age maybe don't
have to because they're not forced to have these harder
conversations about who are we to each other, and what
is our future like, and what happens when we deal
with a crisis together of this magnitude, and how do
we get both of our needs met?
Speaker 1 (40:47):
In this way? This could do one of two things
for the two of you.
Speaker 2 (40:53):
It could put you, guys in a place where you're
both not willing to talk about it, and then you're
going to both feel isolated bone or we hope it
has the opposite effect, which is that it creates a
kind of infrastructure and strength and resilience to the relationship
that makes you so much closer than maybe you or
nearly would have been a stage for a relationship.
Speaker 3 (41:14):
I was thinking when you were just saying that when
I have a couple that I'm working with who are
young and who have had to deal with extraordinary stresses
or difficult events, the first thing I say to them
is you have to frame it as we are in
a really challenging situation that will require us to extend
(41:35):
ourselves to the kinds of emotional discomfort we ordinarily would
not have to experience. So we can't just go by
our regular auto pilot. Here, we actually have to pause
and steer together.
Speaker 2 (41:57):
So, Savannah, but what really struck us was when I
asked you to finish the sentence I feel alone, when
you answered with most of the time.
Speaker 1 (42:08):
And in general, caregivers.
Speaker 2 (42:10):
Are so focused on taking care of someone else that
they end up feeling very alone. And you need support too,
and you really need support from people who understand what
you're going through. And your friends who are married in
their early thirties are going to have a very different
experience than you're having right now.
Speaker 1 (42:33):
So we'd like you to find a.
Speaker 2 (42:35):
Support group specifically for couples where somebody is affected by
sickle cell disease. And we think that not only will
that help you to be able to talk about some
of the things that are really hard to talk about,
but it'll also give you a model of how other
people really live and live well. It's something so challenging
(43:03):
when you talked about kids and you thought, well, I
just won't bring it up because it doesn't seem possible.
Speaker 1 (43:08):
You will probably see models of people who.
Speaker 2 (43:11):
Have kids, and you'll see how they do it. If
you decide not to have kids, you'll see models of
that as well. All of the things that you're struggling
with are so specific to I'm married to somebody who
has sickle cell disease, that you really need to find
people who understand, who can provide that community for you.
Speaker 1 (43:31):
As a start.
Speaker 2 (43:32):
You're also going to have to talk to your husband,
of course, but you really need a place to be heard,
to be understood, and to have a space that's yours.
Speaker 3 (43:44):
Okay, that's part one. Here's part two. So part two
is to talk to him, as you might imagine, but
we want you to frame that discussion in a very
specific way. And the frame of the discussion is specific
because it's about I think closer. You want to feel
like you are addressing this as a partnership as a team.
(44:05):
Even though he's the one that's suffering it, you're both
dealing with it, and so you want to be able
to have a series of talks about different things that
you'll put them on the table, that you can be
honest and open with one another and deal with it.
I want to have a series of conversations, and I
want to start today, you say to him, said by
talking about just one topic, and so we want you
(44:25):
to prepare a list of the topics that you would
like to talk about with him, just so he understands
roughly what those things are. So they would be things
like your sex life, whether you should have kids or not,
how you have fun and whether you have enough of it,
how you guys socialize and whether there's enough of that,
what fears you might have of the future, how you're
(44:45):
dealing with ongoing stress, how you deal with decisions. For example,
you might need to make the point that, of course
it's your decision whether you take a supplement. I want
to feel like, as your wife, I can voice my
opinion about it, I thought about it, and then the
decision is yours.
Speaker 2 (45:03):
And I want to hear how you feel about something.
If you decide to do something, or you don't decide
to do something, I want to understand. Why tell me
about your fears, tell me about your choices, and let
me tell you about how I feel about these things.
And the same thing with the kids discussion.
Speaker 1 (45:21):
It's not just.
Speaker 2 (45:23):
Let's decide whether we're going to have kids or not.
It's let's talk about how we feel about the idea
of being parents. At this point in our lives, and
if you do decide to have kids, you're going to
have lots to talk about, like what do we do
about genetic testing and how do we both feel about
that given the genetic nature of this illness. These are
the kinds of conversations that will make you stronger as
(45:45):
a couple no matter what you decide.
Speaker 3 (45:48):
And that's what you need to tell that the point
of these conversations is to feel more connected and more
partnered as a couple, so we're stronger. And then you
give them the list and say, so, here's a list
of topics, and I'd like you to choose one of
them that we can talk about today. And then the
next week we'll talk again, and this time you give
me a list of topics you want to talk about,
(46:09):
and I'll choose one and we'll talk about that, and
that's how we'll take turns. But we need to get
into a regular routine of having these conversations.
Speaker 2 (46:19):
It helps to have that structure, so it's not just
we need to talk about what, and then you sort
of kitchen sink at all where all these different topics
come into one conversation and the fact that the person
gets to choose which topic it is. You know, you
alternate weeks from each other's lists. That means that each
of your concerns are going to be addressed. So he
gets to choose from your menu and you get to
(46:41):
choose from his menu.
Speaker 3 (46:43):
And if he says, but what about this, you say,
that goes on your list then and if you come
up with something, then you go, I guess I'll put
that on my list because we're not talking about it
now because right now it's taking to one talk only.
Speaker 2 (46:54):
So we'd like you to join a support group for
partners of people with sickle cell disease, and we'd like
you to really open up in there. There are going
to be certain things that you feel more comfortable saying
in there than you might feel sank to SID, and
that's your space to do that. And then we'd like
you to open up that conversation with SID with the
new frame and give him your menu and invite him
(47:18):
to pick something from the menu for that day, and
then have him create a menu for you, and then
you'll get to choose and report back to us.
Speaker 3 (47:28):
How do you feel about doing these things?
Speaker 5 (47:30):
I feel good.
Speaker 4 (47:31):
I've never even thought about a support group before. I'm
really open to that and seeing what other people's experiences
are and being able to learn and be able to
communicate better. I think that the structure and the list
and having the other person pick is definitely an easier
way to bring up really hard conversations. So yeah, I'm
(47:55):
actually excited to do it that way.
Speaker 3 (47:59):
Great.
Speaker 1 (48:00):
We look forward to hearing how it goes.
Speaker 3 (48:09):
You know, what strikes me here is that she's been
dealing with this for They've been married for three they've
been living together two before that, they've been dating for
eight years, and I somehow think that she's still very
much a newbie to this in some way because the
idea of the support group or the idea of having
these conversations, she was so excited by it. I'm so
(48:31):
glad she wrote to us because I think just breaking
her out of that mold of no, you do not
have to deal by yourself.
Speaker 2 (48:36):
Yeah, that's something that a lot of caregivers say. It
never occurred to me to prioritize me, And I think
that they feel some kind of guilt, like it's one
or the other that if I give time to myself,
then I'm being a bad caregiver.
Speaker 1 (48:51):
To the other person.
Speaker 2 (48:53):
You will be better not just as a caregiver, but
as a person if you take care of yourself. It
is mandatory that you take care of yourself. This image
keeps going through my mind of she was talking about
how sometimes sid will wake up in the middle of
the night because he's experiencing excruciating pain or he's having
(49:13):
a panic attack because of the enormity of what he's experiencing,
and he either wants some food from her or he
wants a hug, he wants some reassurance. And I had
this image of her comforting him and nobody comforting her.
How scary to wake up and find your husband is
having this pain crisis but there is no one attending
(49:36):
to you in that moment.
Speaker 1 (49:38):
Did you see the big smile on her.
Speaker 2 (49:40):
Face when we said the thing about the support grove. Yes,
she was so excited about that. And I think the
part two of it of Wow, we're going to have
these conversations. But there's a frame and there's a structure.
Speaker 3 (49:52):
The menu does a look because when couple's kitchen sink,
it it means that they don't talk enough, and so
whenever they do, each of them has the poster. Let's
throw in all my complaints, because who knows when we'll
be able to talk again. And it's exactly because of
that that the menu is so important and a lot
of couples can use this menu idea that you create
a list of the things that you want to talk about.
Your partner creates a list, and each time you set
(50:14):
aside time to talk about one thing, and each one
chooses from the other person's list. For couples who don't
talk well and who need godrails for their discussions, that
menu idea is a great thing they can implement.
Speaker 2 (50:26):
Well, I'm really looking forward to hearing how it goes
for her. You're listening to Dear Therapist for my Heart Radio.
We'll be back after a quick break.
Speaker 3 (50:50):
Well, we heard back from Savannah, and I'm curious to
see how that went.
Speaker 4 (50:54):
Hey, Laurie and guys, this is Savannah. I wanted to
let you know that things have been going really well.
We both made those lists and we had two conversations
on different topics. All the items on the list were
different for each of us, but we sat down and
just were really open and honest and kept the conversation
(51:19):
that same way. We decided that we were just going
to talk and not come to any decisions and just
start today and keep it going. And that worked out
really well. We talked about two pretty big things that
were on both of our minds, and it was the
first time that it had come up for both of us,
(51:41):
and it felt really good to be able to talk
about it and open up about it and.
Speaker 5 (51:48):
Almost like clear the air. And every time we would
veer off topic, we would just sort of come back
to the one thing that we had talked about, you know,
exactly the way I said to do it, and it
would work out. And that's what happened, and it made
it a much more productive conversation.
Speaker 4 (52:08):
And I think that has allowed us to know what
the other person is going through and understand it on
a different level. And I think it's going to help
us as we continue to have these harder conversations in
the future. It has definitely opened the door for conversations
(52:28):
for both of us, and I think it's going to
help us a lot in the long term. Unfortunately, on
the support group side, that has been a lot more challenging.
It's just hard to find one for a spout, so specifically,
most of the ones that I've been able to find
are for families of children. But if I'm going to
keep searching and keep trying to find options, and I'm
(52:52):
gonna ask around, ask the doctors, ask people in the community,
and take it from there, maybe there are of the
are infectious diseases or something that are similar Where there
is one specifically for spouse's I'm committed to doing it
and to finding it and certainly not going to give up,
especially given that the other half of the advice was
(53:17):
super helpful and.
Speaker 5 (53:17):
Came in handy and I feel so much better. So
thank you again.
Speaker 4 (53:23):
Definitely moving forward in a much more open way, and
I really really appreciate it.
Speaker 5 (53:30):
Thank you. Bye.
Speaker 2 (53:32):
I'm really glad that Savannah started having these conversations that
are long overdue. It's really common when you're the caregiver
that you're afraid to talk about anything that's bothering you
because you feel like your concerns don't rank as high
on some kind of hierarchy of needs as your partners
who's struggling with the illness. What she saw is that
(53:53):
it helped both of them to be able to use
the menu. And now I think there's hope of being
able to be heard, being able to have their needs met,
and also being able to come closer to one another.
Speaker 3 (54:05):
I've worked with many people who've had chronic illnesses, and
it often comes back that when one person opens the door,
the other person goes, oh great, I'm dying to open the.
Speaker 2 (54:14):
Door right and doing it with the menu gives them
a structure for this, and even though the topics are
very serious, it also makes it a little bit fun,
like what am I going to choose from your menu today?
Speaker 3 (54:25):
I think that this is something all couples can use
because it's always a little bit of a tense point
when you want to have a discussion. So to come
and say, here's my menu, come up with one. We'll
do one of mine one time, one of yours another
time is a great way for couples to tackle hot
button or sensitive.
Speaker 1 (54:40):
Topics in the meantime.
Speaker 2 (54:42):
I think the support group would be very helpful for her,
and I just want to say that even though she
wasn't able to find a support group for caregivers specifically
related to sickle cell, I would urge her to just
go to a support group for caregivers in general. There
are many support groups out there for people who have
a partner who is ill. I think that caregivers have
(55:03):
a lot of overlap in terms of what they're going through.
Speaker 3 (55:05):
I agree, but my recommendation always is if you're looking
for support group for a specific thing and you can
find it, start one. Hey, fellow travelers, if you've used
any of our advice from the podcast in your own life,
send us a quick voice memo to Loridguy at iHeartMedia
(55:27):
dot com and tell us about it. We may include
it in a future show.
Speaker 2 (55:31):
And if you're enjoying our podcast each week, please help
support dear therapists. You can tell your friends about it,
and we'd be so grateful if you'd leave us a
five star review on Apple Podcasts. Your reviews help people
find the show.
Speaker 1 (55:44):
You can follow us both online.
Speaker 2 (55:46):
I'm at Lorigottlieb dot com and you can follow me
on Twitter at Lorigottlieb one or on Instagram at Lorigottlieb
Underscore Author.
Speaker 3 (55:55):
And I'm at Guywinch dot com. I'm on Twitter and
on Instagram at guywe If you have a dilemma you'd
like to discuss with us, big or small, email us
at Lorianguy at iHeartMedia dot Com.
Speaker 2 (56:08):
Our executive producers Christopher Hasiotis, were produced and edited by
Mike Johns. Special thanks to Samuel Benefield and to our
podcast Fairy Godmother Katie Couric. Dear Therapist is a production
of iHeartRadio.
Hey, fellow travelers. I'm Lori Gottlieb.
Speaker 2 (00:07):
I'm the author of Maybe You Should Talk to Someone,
and I write the Dear Therapist column for the Atlantic.
Speaker 3 (00:11):
And I'm Guy Wench. I wrote Emotional First Aid, and
I write the Dear Guy column for Ted. And this
is Deo Therapists.
Speaker 2 (00:19):
This week, a young woman struggles to find a balance
between taking care of her own needs and caring for
her husband, whose chronic illness is taking a toll on
their marriage.
Speaker 4 (00:28):
We got married, we were in this together. I'm definitely
scared that our marriage could fall apart. I just don't
know what to do without making it like this is
his problem.
Speaker 2 (00:38):
Listen in and maybe learn something about yourself and the process.
Speaker 3 (00:48):
Deo Therapist is for informational purposes only, does not constitute
medical advice, and is not a substitute for professional medical advice, diagnosis,
or treatment. Always seek the advice of your physician, mental
health professional, or other qualified health provider with any questions
you may have regarding a medical condition. By submitting a letter,
you are agreeing to let iHeartMedia use it in Potter
(01:09):
and Full and we may edit it for lengthen or clarity.
Hi Guy, Hey, Laurie.
Speaker 1 (01:16):
So I can't believe it.
Speaker 2 (01:17):
But here we are wrapping up our very first season
of Dear Therapists.
Speaker 1 (01:22):
It feels like it has just flown by.
Speaker 3 (01:25):
It really does. And when I think of all the
topics that we've covered, and all the lovely people that
we've spoken to, and all the emails from people telling
us how much they took away from each episode, it's
been quite a journey.
Speaker 2 (01:42):
And what I love the most is when people write
and say that even though they haven't found themselves in
exactly the same situation, that they've taken our advice and
applied it to their lives in different ways.
Speaker 1 (01:54):
And that's what we're trying to do here.
Speaker 2 (01:56):
And because we think about our last episode of the
season in we wanted to choose a letter that really
reflected twenty twenty.
Speaker 3 (02:05):
Yeah, and for us, and I think for many many people,
twenty twenty was about being able to care for yourself
even as we're caring for one another, and finding that.
Speaker 1 (02:16):
Balance that's right.
Speaker 2 (02:18):
And so this week we have a letter about a
really common relationship dynamic that people don't talk about enough,
and it has to do with what happens when somebody
in the relationship needs care and the other person has
to be both the partner and the caregiver.
Speaker 1 (02:35):
So here's how the letter goes.
Speaker 2 (02:37):
Dear therapists, my husband said has sickle cell disease, and
over the past three years, it seems like the pain
keeps getting worse, lasts longer, and he's out of it
for more days each week. Medically speaking, he's in pretty
decent shape. His blood work is good for his condition,
so there isn't much the doctors can do as it
gets worse and worse. It's really affecting our marriage emotionally,
(02:58):
financially and physical. I sometimes feel like more of a
nurse than a wife, and I try really hard not
to put any additional stress on him, hoping that if
he doesn't have to deal with the usual stressors of life,
that he'll get better faster. This in turn, puts a
lot more pressure on me, so I feel like a
stressed out mess a lot of the time. It's gotten
so bad that I'm terrified about what the future will
(03:19):
look like. I'm also afraid that once he does start
to feel better, I'm just going to be waiting for
the other shoe to drop. I feel like i'm sabotaging
our marriage because I'm not sure how much more I
can handle. Do you have any suggestions about how to
manage the situation? Thanks Savannah.
Speaker 3 (03:35):
Sickle cell disease is a blood disorder that causes your
body to make an unusual form of hemoglobin and that
has all kinds of impacts. It creates anemia blockage, but
the biggest symptom is these crises of pain that can
be short or long and intense. The pain can be
(03:55):
very severe, and it's the biggest part of sickle cell
that people tend to deal with. It's hereditary, it's life long.
To be a caretaker in a relationship, in a marriage
is very difficult because you have to juggle the needs
of the quote unquote patient with the emotional needs of
each of the individuals, with the needs of the relationship
(04:17):
and of the couplehood. And is a lot to juggle
for one person. And usually the person who is put
lost on the list is the caretaker in terms of
taking care of their own needs.
Speaker 2 (04:28):
And not only is that person last on the list,
but they feel guilty for having any needs. They feel like,
I can't have any needs because this other person's needs
are so much more significant than mine. And so the
daily things that come up in a marriage, the daily
things that come up in a person's life, They feel like,
I don't want to burden my partner with this, and
yet that's the stuff of marriage. And so we want
(04:50):
to find out a little bit about how that got lost.
And I think there's another aspect to this, which is
the fear that sometimes people can't talk about, like the
hard things. Is this person's life expectancy going to be shortened?
Am I going to be left alone? Is this person
going to die? Is this person going to have this
acute pain crisis? That is really hard for me to
(05:12):
watch because I love this person so much and it scares.
Speaker 1 (05:15):
Me when I see this.
Speaker 2 (05:17):
And sometimes the caregiver partner feels like I can't talk
about my feelings about this with anyone. I don't want
to alarm the person that I'm feeling this way. And
what gets lost in all of this is that there's
still a married couple. So how do they bring the
marriage aspect of this, some normalcy into a situation that
(05:38):
isn't quite normal.
Speaker 3 (05:40):
Yeah, there's a lot we need to find out here.
Let's go talk to her. You're listening to Deal Therapists
from iHeartRadio. We'll be back after a quick break.
Speaker 1 (05:57):
I'm Lori Gottlieb and I'm.
Speaker 3 (05:58):
Guy Wench and this Therapists.
Speaker 1 (06:02):
Well, Hi Savannah, Hi, how are you good?
Speaker 3 (06:05):
And welcome to the show.
Speaker 5 (06:06):
Thanks for having me.
Speaker 3 (06:07):
So, Savannah, we read you Aletta, and we chose it
because it's such a common situation for somebody and a
couple to require caretaking for a medical condition. But we
wanted to stop by maybe getting a little bit of
history about you and the marriage.
Speaker 4 (06:21):
Yeah, so we met about eight years ago through friends
of friends.
Speaker 5 (06:26):
We were going to the same club, just on an outing.
Speaker 4 (06:30):
One thing led to another and we are have now
been married for over three years.
Speaker 2 (06:37):
When you first met, had he been diagnosed with sickle
cell disease? Usually people are diagnosed in childhood.
Speaker 4 (06:44):
Yeah, he knew, His parents knew before he was born,
so he grew up with it.
Speaker 2 (06:49):
And what was your reaction when you found out? Did
you understand what that meant?
Speaker 5 (06:58):
I don't think I understood the gravity of it.
Speaker 4 (07:00):
It took a while for him to tell me that
that was the case, and I remember googling, you know,
just to understand more about what it is and it
was so irrelevant in the beginning, Like he just seemed
like such a normal person who did everything that his
friends did. We went out and hung out and drank,
(07:21):
you know, we'd normal like twenty five year olds, and
he was in.
Speaker 5 (07:25):
Law school at the time and that's not an easy
thing to do.
Speaker 4 (07:28):
So yeah, it just didn't even cross my mind that
it would become anything bigger than what it was.
Speaker 3 (07:35):
And when did it stop becoming a thing?
Speaker 4 (07:37):
So right after we got married, we moved to Seattle,
and it was a couple months after that that it
just became this thing, like every day where he was
in pain, and then he would be taking more and
more medication and that would lead him not to be
able to like get through the day because he was
so out of it. And so for the last almost
(07:59):
three years, it's been a pretty consistent thing. We moved
in together about two years before we got married. I
remember thinking at the time that it was definitely worse
than what I had initially expected when we weren't living together,
but not nearly as bad. It was the minor pain
(08:21):
that was here and there that I started to see
that I never used to see before.
Speaker 5 (08:25):
But it wasn't debilitating.
Speaker 2 (08:26):
It just was there when you started to see some
of the symptoms when you moved in together. Did you
ever at any moment think I'm worried about what this
could become or I'm worried about marrying this person.
Speaker 5 (08:40):
No.
Speaker 4 (08:41):
I only thought about it as like I'm worried about
the impact that it has on his life. I never
really thought about it in relation to myself.
Speaker 3 (08:53):
When did you stop thinking about it in relation to you?
Speaker 5 (08:57):
Probably within the last year.
Speaker 4 (09:00):
He had moved out of Seattle to la thinking that
the weather would make things better and get back to
sort of normal or as normal as can be. That
year that we were in Seattle, it was sort of
like just learning about it being bad and seeing how
it happened, and then focusing so much time on getting
(09:21):
out of there. And then the last couple of years
in LA I think over the last year is sort
of where I started to see it affecting me more
and more.
Speaker 3 (09:33):
And what's his level of functioning He was in law school?
Is he working now?
Speaker 4 (09:36):
He has his own business so he can make up
his own hours. He really loves that, and that's what
he's really passionate about. But I don't think he would
be able to have a corporate job at this point,
and he did so.
Speaker 5 (09:51):
Right after law school, he did.
Speaker 4 (09:52):
Have a corporate job and it was fine, But today
I don't think it's possible.
Speaker 2 (10:00):
Can you take us through a typical day of what
your life is like now and.
Speaker 1 (10:04):
What the two of you do, and how old are
you both?
Speaker 4 (10:07):
We are both thirty three. I'll wake up around probably seven.
He's usually asleep until I would say ten or eleven,
and I'll just start my day. I have a full
time job, so I'll work throughout the day and he'll
wake up later, and he will try and work and
get through his day.
Speaker 5 (10:26):
Sometimes he can.
Speaker 4 (10:27):
And then when I'm finished, we'll hang out, I'll cook dinner,
we'll spend some time together.
Speaker 5 (10:35):
And then as I am ready.
Speaker 4 (10:38):
To go to bed, he's like awaken in pain and
working through something or watching a movie, sort of trying
to get his mind off of it. And then if
it's really bad, sometimes he'll wake me up in the
middle of the night.
Speaker 5 (10:49):
Because he's been up for so long.
Speaker 4 (10:50):
If he's like starving and needs a snack or something
and he can't get downstairs, then he'll ask me for help.
Or sometimes he'll like wake me up just from sort
of like almost like a panic attack, just for like
a hug or something to bring him down, and then
we kind of startle over again. Whenever we try and
(11:10):
go see friends, I never expect that he will come.
Speaker 5 (11:13):
It's always up in the air.
Speaker 4 (11:15):
Or if we have an activity planned, we have to
make sure that it's not too late in the evening,
or like sometimes we have to make sure that we
can cancel things just because we know that it may
or may not happen.
Speaker 2 (11:26):
How has the community around you, your circle of friends
responded to what's going on.
Speaker 4 (11:33):
Most of my friends are still in New York, so
whenever I go home, they don't usually think that he'll
be there with me, and they're supportive as they can
be sort of from a distance.
Speaker 5 (11:44):
Same with both of our parents. And then I.
Speaker 4 (11:46):
Think, here we don't really have close enough friends to
be able to have that conversation with them. My job
definitely knows what's going on, and so if I need
to take the time, they're very flexible and supportive as
much as possible.
Speaker 3 (12:01):
Do you have a sense in terms of the disease
progression where he's at, what his prognosis is?
Speaker 4 (12:07):
Yeah, not at all the doctors don't really know, and
there's a lot of new medications coming out and new therapies,
so I think it's sort of changing. It's not really
something that we've talked about deeply. It has been a
hard conversation to talk about options because he very strongly
(12:29):
believes that it's entirely his decision.
Speaker 5 (12:32):
And that's, you know, rightfully, So.
Speaker 4 (12:34):
What is his decision whether or not to explore any
new medications, whether or not to explore any new therapies
things like that? Sometimes like I think he sort of
should be doing more.
Speaker 1 (12:48):
What do you think he should be doing?
Speaker 4 (12:51):
Well, there are a couple of new therapies and I
think he should explore them further. There was this one
supplement that his doctor recommended that's supposed to help, but
it hasn't been taking it in the quantity that he's
supposed to be and so it wasn't really helping.
Speaker 1 (13:08):
Do you know why he wasn't taking it?
Speaker 3 (13:10):
And I don't.
Speaker 5 (13:11):
I try to understand, and I just I don't.
Speaker 2 (13:16):
So what happens when you ask him?
Speaker 4 (13:22):
He kind of brushes it off and just says that
he will or he forgets or something.
Speaker 5 (13:26):
And then I try and remind him any things.
Speaker 4 (13:28):
I'm putting too much emphasis onto this supplement, and it's
supposed to.
Speaker 5 (13:32):
Have some benefits for sickle cell patients.
Speaker 2 (13:36):
You know what I'm hearing is that when you say
he brushes it off, I think you both brush it off,
because what happens is you're talking about take the supplement,
don't take the supplement, as opposed to what's going on
emotionally for both of you. It's so much easier. By
the way, it's very common for people, especially in this situation,
to say, let's talk about treatment options, and let's talk
(13:57):
about your pain, and let me get you a snack
in the middle of the night, as opposed to what
is this experience like for us, not only as a
married couple, but as a young married couple, because there's
something so isolating anyway for a caregiver in any situation.
Often the caregiver is the last person whose needs are
attended to. But when you're a young couple and you
(14:19):
watch all the other couples your age, I think that
most of what you see as people in their early
thirties going through early stages of marriage, maybe having children,
lots of career stuff going on, and you guys have
this other layer that's also there, and so there's a
sense of isolation. And what happens is it gets translated
(14:42):
into the couple. So when he doesn't take the supplement
and you say how come you didn't take the supplement,
you do come across to him as sort of a
parental figure as opposed to a partner. For you, you
say to yourself, I'm really worried about this. He has
this option here that I think might help him, and
I get really frustrated and angry that he doesn't want
(15:04):
to do it, and you don't say that to him.
And what he doesn't say to you is I don't
want to take the supplement because and I wonder why
you both are avoiding in some way having the conversations,
not about the what, but about the why.
Speaker 4 (15:20):
Yeah, it's hard for me because a few times that
we have tried to have this conversation, we end up
in a fight, and I would just rather not bring
it up than end up fighting about it again.
Speaker 3 (15:29):
Savannah, how much is it clear for the two of
you that the sickle cell impacts you very much as well?
Have you told him the extent of the effect that
it has on you?
Speaker 5 (15:44):
I think so. I actually I don't know.
Speaker 3 (15:49):
Tell us about an attempt to try and explain to
him how it's impacting you.
Speaker 4 (15:56):
I guess if you put it that way, I don't
think I have done a very good job in trying too.
It sort of comes out in other parts of conversations.
I think the one time that's very clear is he
sort of asked me how much of it was me
wanting him to get better versus how much me needing
him to get better for our sake, on like a
(16:17):
scale from zero to one hundred, and I think I
said it was probably like eighty to ninety percent wanting
him to get better for him, and then the rest
they're like ten to twenty probably for us.
Speaker 2 (16:28):
Why only ten to twenty for the two of you?
I think implicit in his question was how much do
you care about me? How much do you love me?
And I think that somehow in his mind, and again
I want to really emphasize that just in his mind,
is that he thinks that if you give a high
percentage to how much do you want me to get
(16:49):
better for the sake of our marriage, that somehow that
makes him less important to you.
Speaker 5 (16:54):
That sounds right or you don't.
Speaker 2 (16:56):
Empathize as well as you should. This happens a lot
with couples where somebody is really thrust into the role
of caretaker, where you forget that you're still a married couple, right,
and so this does impact both of you, and it
should because you are a couple.
Speaker 3 (17:19):
Yeah.
Speaker 4 (17:19):
I think the way that I'd interpreted that question was like,
if we were to say split up, would I still
want him to get better?
Speaker 5 (17:29):
And of course I would.
Speaker 4 (17:31):
You know, I wouldn't wish that on anyone, especially somebody
who I loved, And even if you know there was
something that we couldn't reconcile, like, I would still want
it for him.
Speaker 2 (17:40):
Does he worry that you might not stick around if
this gets worse?
Speaker 4 (17:46):
I think he thinks that it could be too much
for me, Like there is a possibility that it gets
to a point where I just can't handle it anymore.
Speaker 2 (17:54):
Has he actually said that to you or is that
something that you're thinking he thinks it before?
Speaker 3 (18:02):
Because I think that that question actually was a fear
on the one hand, and on the other hand, giving
you an opportunity to open the door and say, yes,
I want you to get better, but I also want
to talk about what it's doing to us. In other words,
I do think that he might be fishing a little
bit for you to bring up your part of this
(18:25):
more than you've been willing to do. And I know
that a lot of people when they're in his situation
really go between feeling I need this help and feeling
guilt on the one hand, and then feeling like, but
if she tells me this is really hard for her,
that'll really be too much for me. I want to know,
but I don't want to hear it kind of feeling.
And I'm wondering if he's in that boat a little bit.
Speaker 5 (18:46):
Yeah, that definitely sounds possible.
Speaker 3 (18:50):
So then you're sparing him by not wanting to burden
him by telling him how much it's impacting you. And
I'm just not sure that, given what you wrote and
how you're feeling, whether that's manageable for much longer for you.
I'm not sure you have the option to spare him
that for much longer. And this is in part why
(19:13):
you wrote to us being able to talk to him
more about Look, this is really hard for me, and
I need us to talk. How much you there, I
don't know, you don't know if you're ready for that,
what's your fear.
Speaker 4 (19:31):
I'm definitely scared that our marriage could fall apart, and
I certainly don't want it to.
Speaker 5 (19:37):
I just don't know what to do.
Speaker 4 (19:40):
That will help both of us without making it like
this is his problem, because I don't want it to
feel that way. Right Like we got married, we were
in this together. I just want to know what more
either I can do or both of us can do
in order to have it be something that isn't sort
(20:00):
of always in everything.
Speaker 2 (20:04):
It is in everything in the sense of this is
going on and it doesn't go away, and nobody gets
a night off from the fact that he has.
Speaker 1 (20:11):
Sickle cell disease.
Speaker 2 (20:13):
But what's also going on at the same time that's
not going away is you, guys are a couple, and
so the thing that's going to be helpful for the
two of you is what is the nature of the
connection between you guys as a married couple, even though
you have this challenge in your marriage. And I say
challenge in your marriage because it's a challenge for both
(20:34):
of you. Yes, he suffers more. He has the excruciating
pain he has, the anemia and the fatigue he has,
and I don't know if you two have talked about
this a shortened life expectancy, and so, how do you
talk about the fact that there's a lot going on
in your marriage that's unrelated to this? I hope, but
(20:54):
I don't know how much is. And then this is
also happening, and I think it's taking up so much
much space because no one's talking about it. Usually the
things that we don't talk about because we feel like
they're going to take up so much space, we actually
make them take up more space by not talking about them.
You know that line when you get married in sickness
(21:15):
and in health. That line was especially relevant.
Speaker 1 (21:18):
To the two of you.
Speaker 2 (21:21):
When you think about how you imagined your marriage would
go at the moment that you recited those vows versus
how it's going now.
Speaker 1 (21:29):
Can you tell me what the difference is?
Speaker 4 (21:33):
In my mind, it was we're already doing the sickness thing,
and it's fine. We both sort of make these sacrifices
here and there, right Like he misses out on things
because he feels it, and then I will miss out
on things like let's say we've had plans to go somewhere,
then I'll just you know, I'll miss out occasionally, but
(21:53):
then I can be with him and support him. The
flip side is if I really wanted to do something
or go somewhere or whatever without him, He's not the
kind of person.
Speaker 5 (22:02):
Who will ask me to stay.
Speaker 4 (22:04):
He'll tell me to go and you know, do what
I wanted to do, and he'll just deal with it
on his own. And that's kind of what I expected, Like,
that's sort of what we were doing before, and that's
what I anticipated the future would be like.
Speaker 2 (22:19):
When you did your research on sickle cell disease, one
of the things that's very much out there is what
the symptoms are, what they can become. And again this
question of average life expectancy, which I think for sickle
cell disease is quite young.
Speaker 1 (22:38):
Did you google that?
Speaker 4 (22:40):
I did, but it was like, well, that's everyone else,
that's not him. I think he said that it runs
in his family, and so he's had other families who
have lived full lives and till they were much older,
and so he's not really worried about this shortened life span.
Speaker 5 (23:00):
So I shouldn't worry about the shortened life span.
Speaker 3 (23:04):
You mentioned earlier that you're worried that talking to him
about things in terms of how they impact you and
the marriage might cause things to unravel and cause a
big fight. Now, you seem to love him, you seem
to want to figure it out. In fact, you seem
a little too much to want to figure it out
by yourself really without him as much, and to spare
(23:26):
him more. But you seem to be worried that he's
going to have the bad reaction to that conversation. He's
going to have a difficult time talking about how this
impacts you, perhaps how this impacts the marriage. Why are
you worried about that? What have you heard from him
that indicates that he will have a hard time having
that kind of conversation To give space for your experience
(23:52):
side by side with his.
Speaker 4 (23:53):
I think it's like the stress of the conversation puts
his body into and that causes sickle cell pain.
Speaker 3 (24:03):
How quickly, immediately as soon as you start the conversation.
Speaker 5 (24:06):
No, just as it goes on.
Speaker 4 (24:07):
And if it sort of doesn't go well, then it
could be a night where he doesn't sleep or he's
in so much pain he just has to keep taking medication,
and then he doesn't sleep or does sleep throughout like
half the next day and so the effect is so
big that it's hard sometimes to bring it up. I'm
(24:29):
not afraid of what he'll say, I'm afraid of what
reaction his body will have.
Speaker 3 (24:35):
That means you're afraid to discuss any difficult.
Speaker 4 (24:38):
Topic with him, Yeah, I mean having really difficult conversations,
like I have to think about it and figure out
how to bring it up. Sometimes we have to stop
and take a break and try and bring it up
again at a later time.
Speaker 2 (24:50):
Because what happens in that moment where you feel like
we need to revisit this later.
Speaker 1 (24:56):
Are you guys arguing with each other? What happened?
Speaker 4 (25:00):
We don't really raise our voices all that much. It's
not really how we fight. We sort of just like
we can't get through to each other. We can't explain
things in a way that the other person understands, and
so we just end up talking in circles and it
it just gets frustrating.
Speaker 2 (25:16):
You're worried about talking about anything that might upset him
because not only will it potentially hurt him emotionally, but
it could hurt him.
Speaker 1 (25:23):
Physically, which.
Speaker 2 (25:27):
Makes it impossible for you to have any space at
all emotionally in the couple. I don't know that you
guys can get closer if you're living in your own silos.
He's experiencing what he's experiencing. You're experiencing what you're experiencing.
(25:53):
But nobody's talking about not only what's going on in
the present, but what might happen in the future.
Speaker 1 (26:00):
Talk about it.
Speaker 2 (26:00):
Before you got married, there was this reasurance from him, well,
everybody in my family does well with this disease, so
it's going to be okay. And you said, I guess
it'll be okay. I don't know if you ever thought
about having kids. Did you guys think about that?
Speaker 5 (26:13):
We also sort of table that.
Speaker 4 (26:17):
I mean, neither one of us was sure, you know,
a couple of years ago, and I think we're just
trying to figure it out if that's something that we
want to do.
Speaker 5 (26:26):
In this moment. I don't know that we can give
in sort of everything.
Speaker 2 (26:32):
I want to ask a different question, not whether you can,
but I want to know what it is that you want.
Speaker 5 (26:42):
I don't know. I truly didn't know a few years ago.
Speaker 4 (26:48):
I think now I'm getting to the point where like, yes,
I think I do you do what?
Speaker 3 (26:54):
Yeah, yeah, something that's happening Savannah, is that whatever you
used to thinking about your needs and your feelings, sickle
cell jumps into that frame and blocks you from pursuing
it because I need to talk to him, but oh,
that'll put him in pain. I think I want kids,
(27:16):
but that'll be a lot to talk to him about.
Right now, I'm feeling that there's not enough space for
me and my feelings in this, but I can't voice
that because we'll get into an argument. And I think
that fear is a short term fear, because the fear
is it'll make him feel bad that night. But right now,
what's accumulating is all the stresses of where is she at,
(27:37):
because I don't know how she's, what she's feeling, and
whether she wants to be in this.
Speaker 2 (27:42):
The thing about a chronic illness is that it flares
up sometimes and then things seem sort of normalish sometimes,
and you don't want to get too hopeful in the
normal moments because your guard is down, and then when
the pain starts again, then you're just drawn right back
into it. But it feels harder in some ways because
(28:03):
you had your hopes up. It sounds like you're just
in constant survival mode. That you're not really living because
you're just trying to survive. And the part that's missing
in this marriage right now is that you are a
young married couple, and yes, there's this big challenge that
(28:25):
you have, but there's so much more to this marriage
than that, and there's no room at all for that.
It's like, let's be careful about what we talk about.
Let me not burden him with what's going on in
my day. My concern about what happened with my boss
or my job or my friend might seem irrelevant to him.
So you're not really connecting at all. And there's so
(28:46):
much fear of talking about what's already looming so large
between you. It's not like because you're not talking about it,
it's not there. It's so there, things like I think
I want to have kids. It's things like I worry
about the progression of this disease. Can we talk about
what happens if something happens where you do get very
(29:09):
ill at one point, we might want to get a
caregiver for you. Can we talk about how we talk
about decisions around your care and where we can have
discussions about it, even if ultimately it's your decision. Can
we talk about why you don't want to take the supplements.
I just want to understand how you think and feel
(29:30):
about these things. Can we talk about what happens at
the doctor and who's in those meetings and discussions, and
then can we also talk about how we can have
some normalcy in our marriage?
Speaker 1 (29:43):
Right?
Speaker 2 (29:44):
Are you guys having sex? Are you having any kind
of intimacy with each other? Are you socializing with people
when he's feeling up to it? What do you do
to have fun together? Do you have any movie nights
or date nights knowing that it might get canceled?
Speaker 3 (30:00):
Actually, I want the answers to all those questions. These
are great questions you asked Lorie. Can we pose and
just get some of those answers.
Speaker 4 (30:07):
Yeah, we don't have sex very often since when probably
the last like two years.
Speaker 3 (30:16):
I would say, because he's not up to it.
Speaker 4 (30:22):
I think it's a combo. I think some of it
is that he's not feeling well. I think some of
it is I've just been really tired more over the
last year, I would say, And I think part of
it is I think you hit it on the head
with like we're not really connecting, and so that doesn't
really drive the want to.
Speaker 1 (30:41):
Do you hold hands, do you kiss? Do you hug
each other?
Speaker 2 (30:46):
So what happens when somebody initiates sex and the other
person doesn't want to.
Speaker 5 (30:50):
I think there's just a lack of initiation.
Speaker 1 (30:55):
So nobody's initiating.
Speaker 3 (30:57):
Not often, and I'm assuming you're not talking about it.
Speaker 4 (31:02):
We've tried, that's great, But who I bring it up?
Speaker 3 (31:09):
And what happens in that discussion?
Speaker 4 (31:11):
It usually comes up like at the end of something else.
It's never its own like topic. It's usually a you
know this was wrong, or like there's this or this,
and then also like.
Speaker 5 (31:28):
We're not having sex.
Speaker 2 (31:29):
So that's what we call kitchen sink fighting, where you
kind of throw in everything with the kitchen sink. So
it's like we're fighting about one thing, or we're talking
about one thing, but then let's do this laundry list
of all the other things that I'm upset about that
we haven't talked about.
Speaker 3 (31:43):
But that's not a sincere if it's actually have a discussion, right,
if you just tag it on at the end, he
also understands that he's not going to sit down and Okay,
let's sit down and talk about that now.
Speaker 2 (31:52):
So you've barely had sex for two years. What prevents
you from talking with him about that? You're worried that
it's going to upset him and then he's going to
have a flare up of his symptoms.
Speaker 4 (32:03):
Yeah, I just don't know how to bring it up.
I don't know when to bring it up. I don't
know how to have the conversation. I need to do
something about it, and like that kind of scares me.
Speaker 1 (32:15):
Let me just backtrack for a second.
Speaker 2 (32:17):
If you were in this marriage with Sid and he
didn't have sickle cell disease and you weren't having sex,
how do.
Speaker 1 (32:26):
You think you might bring it up?
Speaker 5 (32:29):
I don't know.
Speaker 2 (32:31):
Right, So, this is what I'm starting to suspect. So
much of what might have been sort of typical marital
issues between the two of you get tossed into this
bucket of well, we can't talk about that because Sid
is sick. But I think that even if he weren't sick,
(32:52):
maybe the two of you don't have the practice talking
about some of these delicate things with each other. It's
so easy to say, well, we're not talking about it
because of what happens with the illness. When we start
talking about things, But a lot of what you're talking
about are actually kind of universal couple's issues. And then
(33:15):
later on top of that is the fact that he's sick,
But things like, how do we talk about our needs
in the relationship? What happens when one person's needs seem
to be bigger or there isn't really space for the
other person's needs. What happens when we have differences of
opinion about things big things in the marriage, What happens
when the intimacy declines because we're not connecting. Any couple
(33:41):
listening to this is probably nodding right now saying, oh, yeah,
those issues are really common. But when you start to
make the excuse that we're not talking about that because
of Sid's illness, now you have.
Speaker 1 (33:58):
This concrete reason that you can't do it.
Speaker 2 (34:01):
What we're trying to say here is that these parallel
tracks don't need to be so parallel of the illness
and the marriage that they're actually quite intertwined. Every marriage
has its stuff. This marriage happens to have this as
its stuff, but it also has a lot of other
stuff that lots of other marriages have.
Speaker 1 (34:21):
And it's not just that he doesn't want to talk
about it.
Speaker 2 (34:25):
It's that I have trouble talking about it, and so
I want to know what the fear is. If the
illness weren't there, what would be your fear of saying
to your husband, Hey, you know we're not having sex
and I want to talk about that with you.
Speaker 5 (34:43):
I don't know. The first couple of years of our relationship,
we just seem to always be on the same page
about everything, and so it was just easy. Nothing big
ever really came up. I don't know how to bring
it up. I don't know how to say it so
that it doesn't like him.
Speaker 2 (35:02):
You say you were on the same page about everything
in the first couple of years of your relationship, But
there are things that come up when you talk about
the future, things like do we both want kids? You're
both in your thirties. Now, what do you think is
going to happen if you never bring.
Speaker 5 (35:19):
This up, we will never have kids, And what do you.
Speaker 2 (35:24):
Think that's going to do for you in terms of
your future? How do you think you're going to feel
about that later? Knowing that you never brought it up,
so it would be one thing if you brought it up,
you talked about it. You came to some place of
peace with it together. I'm trying to help you think
about what might happen if you never bring it up
and you don't have kids, even though your desire is
(35:45):
to have kids.
Speaker 4 (35:48):
I mean, there's like regret and resentment that would probably happen, you.
Speaker 3 (35:56):
Know, what would happen on his end, which is already happening.
Because people who have illnesses which require their spouse to
be caretakers feel guilty a lot, feel worried and fearful
about their own futures a lot, and sometimes it's so
paralyzing they don't even want to deal with it. But
it's there and it's hovering, and if you don't talk
(36:19):
about it together, then he can't express any of that either.
And I think it's going to be very difficult for
you to talk about kids. It's going to be very
difficult for you to talk about sex. It's going to
be very difficult for you to talk about anything unless
you can first learn to talk about sickle cell in
a very open, matter of fact way. I'm not talking
(36:42):
about just the big discussions or fears about the future.
I mean on the day to day, not just transactionally,
but what the impact is or you can't go to
this thing. You understand it's not his fault, of course,
but it's disappointing. Are you allowed to be upset? Can
you be open about the frustrations that you might feel
in moments like that if he is really fearful, like
what if this just gets worse? What if I can't
(37:03):
do anything? Is he allowed to express that? Are you
allowed to express that that you really need to be
able to talk about the elephant in the room in
a much more open way. Are you willing to do that?
Speaker 4 (37:19):
Yeah, beyond like just wanting to, like, I think we
need to, you know, I think in order to be
able to get to anything else, and as you said,
like you're closer, we have to be able to have
the conversation and address it in a way that's meaningful
for the both of us in order to have a relationship,
(37:40):
and a good one at that.
Speaker 2 (37:42):
Savannah, if you weren't worried about his reaction, and you
were being truly open and honest with yourself about how
you feel about what's going on right now, what would
you say?
Speaker 5 (38:01):
I think that.
Speaker 4 (38:05):
Maybe what it would ultimately feel is that like we
sort of aren't on the same page, you know, he
wants to handle things his way and believes that he
is in full control and he needs to do it
on his own, and he can't really share that.
Speaker 5 (38:26):
And I don't know that I can be in a
place where that part isn't shared.
Speaker 2 (38:37):
Okay, so you want to include it? Can you fill
in these sentences? I'm scared because.
Speaker 5 (38:48):
I'm scared because I think we may end up just
wanting completely different things.
Speaker 1 (39:05):
I'm overwhelmed by.
Speaker 5 (39:10):
I'm overwhelmed by the gravity of our current situation and
having to deal with it.
Speaker 1 (39:24):
I feel alone when.
Speaker 5 (39:28):
I feel alone almost all the time.
Speaker 3 (39:39):
I want to point out that when you feel alone
almost all the time, it is very natural to anticipate
that Sid won't respond well when you talk to him,
because the way you envision those conversations is you end
up alone at the end of them, and if it
(40:01):
could be paralyzing.
Speaker 2 (40:04):
And the other thing is that I think a lot
of young couples aren't forced to talk about the hard
things the way you, as a young couple are, And
on the one hand, that might feel overwhelming, but on
the other hand, it gives you something that other couples
don't have. It allows you to become even more emotionally
(40:28):
intimate in ways that other couples your age maybe don't
have to because they're not forced to have these harder
conversations about who are we to each other, and what
is our future like, and what happens when we deal
with a crisis together of this magnitude, and how do
we get both of our needs met?
Speaker 1 (40:47):
In this way? This could do one of two things
for the two of you.
Speaker 2 (40:53):
It could put you, guys in a place where you're
both not willing to talk about it, and then you're
going to both feel isolated bone or we hope it
has the opposite effect, which is that it creates a
kind of infrastructure and strength and resilience to the relationship
that makes you so much closer than maybe you or
nearly would have been a stage for a relationship.
Speaker 3 (41:14):
I was thinking when you were just saying that when
I have a couple that I'm working with who are
young and who have had to deal with extraordinary stresses
or difficult events, the first thing I say to them
is you have to frame it as we are in
a really challenging situation that will require us to extend
(41:35):
ourselves to the kinds of emotional discomfort we ordinarily would
not have to experience. So we can't just go by
our regular auto pilot. Here, we actually have to pause
and steer together.
Speaker 2 (41:57):
So, Savannah, but what really struck us was when I
asked you to finish the sentence I feel alone, when
you answered with most of the time.
Speaker 1 (42:08):
And in general, caregivers.
Speaker 2 (42:10):
Are so focused on taking care of someone else that
they end up feeling very alone. And you need support too,
and you really need support from people who understand what
you're going through. And your friends who are married in
their early thirties are going to have a very different
experience than you're having right now.
Speaker 1 (42:33):
So we'd like you to find a.
Speaker 2 (42:35):
Support group specifically for couples where somebody is affected by
sickle cell disease. And we think that not only will
that help you to be able to talk about some
of the things that are really hard to talk about,
but it'll also give you a model of how other
people really live and live well. It's something so challenging
(43:03):
when you talked about kids and you thought, well, I
just won't bring it up because it doesn't seem possible.
Speaker 1 (43:08):
You will probably see models of people who.
Speaker 2 (43:11):
Have kids, and you'll see how they do it. If
you decide not to have kids, you'll see models of
that as well. All of the things that you're struggling
with are so specific to I'm married to somebody who
has sickle cell disease, that you really need to find
people who understand, who can provide that community for you.
Speaker 1 (43:31):
As a start.
Speaker 2 (43:32):
You're also going to have to talk to your husband,
of course, but you really need a place to be heard,
to be understood, and to have a space that's yours.
Speaker 3 (43:44):
Okay, that's part one. Here's part two. So part two
is to talk to him, as you might imagine, but
we want you to frame that discussion in a very
specific way. And the frame of the discussion is specific
because it's about I think closer. You want to feel
like you are addressing this as a partnership as a team.
(44:05):
Even though he's the one that's suffering it, you're both
dealing with it, and so you want to be able
to have a series of talks about different things that
you'll put them on the table, that you can be
honest and open with one another and deal with it.
I want to have a series of conversations, and I
want to start today, you say to him, said by
talking about just one topic, and so we want you
(44:25):
to prepare a list of the topics that you would
like to talk about with him, just so he understands
roughly what those things are. So they would be things
like your sex life, whether you should have kids or not,
how you have fun and whether you have enough of it,
how you guys socialize and whether there's enough of that,
what fears you might have of the future, how you're
(44:45):
dealing with ongoing stress, how you deal with decisions. For example,
you might need to make the point that, of course
it's your decision whether you take a supplement. I want
to feel like, as your wife, I can voice my
opinion about it, I thought about it, and then the
decision is yours.
Speaker 2 (45:03):
And I want to hear how you feel about something.
If you decide to do something, or you don't decide
to do something, I want to understand. Why tell me
about your fears, tell me about your choices, and let
me tell you about how I feel about these things.
And the same thing with the kids discussion.
Speaker 1 (45:21):
It's not just.
Speaker 2 (45:23):
Let's decide whether we're going to have kids or not.
It's let's talk about how we feel about the idea
of being parents. At this point in our lives, and
if you do decide to have kids, you're going to
have lots to talk about, like what do we do
about genetic testing and how do we both feel about
that given the genetic nature of this illness. These are
the kinds of conversations that will make you stronger as
(45:45):
a couple no matter what you decide.
Speaker 3 (45:48):
And that's what you need to tell that the point
of these conversations is to feel more connected and more
partnered as a couple, so we're stronger. And then you
give them the list and say, so, here's a list
of topics, and I'd like you to choose one of
them that we can talk about today. And then the
next week we'll talk again, and this time you give
me a list of topics you want to talk about,
(46:09):
and I'll choose one and we'll talk about that, and
that's how we'll take turns. But we need to get
into a regular routine of having these conversations.
Speaker 2 (46:19):
It helps to have that structure, so it's not just
we need to talk about what, and then you sort
of kitchen sink at all where all these different topics
come into one conversation and the fact that the person
gets to choose which topic it is. You know, you
alternate weeks from each other's lists. That means that each
of your concerns are going to be addressed. So he
gets to choose from your menu and you get to
(46:41):
choose from his menu.
Speaker 3 (46:43):
And if he says, but what about this, you say,
that goes on your list then and if you come
up with something, then you go, I guess I'll put
that on my list because we're not talking about it
now because right now it's taking to one talk only.
Speaker 2 (46:54):
So we'd like you to join a support group for
partners of people with sickle cell disease, and we'd like
you to really open up in there. There are going
to be certain things that you feel more comfortable saying
in there than you might feel sank to SID, and
that's your space to do that. And then we'd like
you to open up that conversation with SID with the
new frame and give him your menu and invite him
(47:18):
to pick something from the menu for that day, and
then have him create a menu for you, and then
you'll get to choose and report back to us.
Speaker 3 (47:28):
How do you feel about doing these things?
Speaker 5 (47:30):
I feel good.
Speaker 4 (47:31):
I've never even thought about a support group before. I'm
really open to that and seeing what other people's experiences
are and being able to learn and be able to
communicate better. I think that the structure and the list
and having the other person pick is definitely an easier
way to bring up really hard conversations. So yeah, I'm
(47:55):
actually excited to do it that way.
Speaker 3 (47:59):
Great.
Speaker 1 (48:00):
We look forward to hearing how it goes.
Speaker 3 (48:09):
You know, what strikes me here is that she's been
dealing with this for They've been married for three they've
been living together two before that, they've been dating for
eight years, and I somehow think that she's still very
much a newbie to this in some way because the
idea of the support group or the idea of having
these conversations, she was so excited by it. I'm so
(48:31):
glad she wrote to us because I think just breaking
her out of that mold of no, you do not
have to deal by yourself.
Speaker 2 (48:36):
Yeah, that's something that a lot of caregivers say. It
never occurred to me to prioritize me, And I think
that they feel some kind of guilt, like it's one
or the other that if I give time to myself,
then I'm being a bad caregiver.
Speaker 1 (48:51):
To the other person.
Speaker 2 (48:53):
You will be better not just as a caregiver, but
as a person if you take care of yourself. It
is mandatory that you take care of yourself. This image
keeps going through my mind of she was talking about
how sometimes sid will wake up in the middle of
the night because he's experiencing excruciating pain or he's having
(49:13):
a panic attack because of the enormity of what he's experiencing,
and he either wants some food from her or he
wants a hug, he wants some reassurance. And I had
this image of her comforting him and nobody comforting her.
How scary to wake up and find your husband is
having this pain crisis but there is no one attending
(49:36):
to you in that moment.
Speaker 1 (49:38):
Did you see the big smile on her.
Speaker 2 (49:40):
Face when we said the thing about the support grove. Yes,
she was so excited about that. And I think the
part two of it of Wow, we're going to have
these conversations. But there's a frame and there's a structure.
Speaker 3 (49:52):
The menu does a look because when couple's kitchen sink,
it it means that they don't talk enough, and so
whenever they do, each of them has the poster. Let's
throw in all my complaints, because who knows when we'll
be able to talk again. And it's exactly because of
that that the menu is so important and a lot
of couples can use this menu idea that you create
a list of the things that you want to talk about.
Your partner creates a list, and each time you set
(50:14):
aside time to talk about one thing, and each one
chooses from the other person's list. For couples who don't
talk well and who need godrails for their discussions, that
menu idea is a great thing they can implement.
Speaker 2 (50:26):
Well, I'm really looking forward to hearing how it goes
for her. You're listening to Dear Therapist for my Heart Radio.
We'll be back after a quick break.
Speaker 3 (50:50):
Well, we heard back from Savannah, and I'm curious to
see how that went.
Speaker 4 (50:54):
Hey, Laurie and guys, this is Savannah. I wanted to
let you know that things have been going really well.
We both made those lists and we had two conversations
on different topics. All the items on the list were
different for each of us, but we sat down and
just were really open and honest and kept the conversation
(51:19):
that same way. We decided that we were just going
to talk and not come to any decisions and just
start today and keep it going. And that worked out
really well. We talked about two pretty big things that
were on both of our minds, and it was the
first time that it had come up for both of us,
(51:41):
and it felt really good to be able to talk
about it and open up about it and.
Speaker 5 (51:48):
Almost like clear the air. And every time we would
veer off topic, we would just sort of come back
to the one thing that we had talked about, you know,
exactly the way I said to do it, and it
would work out. And that's what happened, and it made
it a much more productive conversation.
Speaker 4 (52:08):
And I think that has allowed us to know what
the other person is going through and understand it on
a different level. And I think it's going to help
us as we continue to have these harder conversations in
the future. It has definitely opened the door for conversations
(52:28):
for both of us, and I think it's going to
help us a lot in the long term. Unfortunately, on
the support group side, that has been a lot more challenging.
It's just hard to find one for a spout, so specifically,
most of the ones that I've been able to find
are for families of children. But if I'm going to
keep searching and keep trying to find options, and I'm
(52:52):
gonna ask around, ask the doctors, ask people in the community,
and take it from there, maybe there are of the
are infectious diseases or something that are similar Where there
is one specifically for spouse's I'm committed to doing it
and to finding it and certainly not going to give up,
especially given that the other half of the advice was
(53:17):
super helpful and.
Speaker 5 (53:17):
Came in handy and I feel so much better. So
thank you again.
Speaker 4 (53:23):
Definitely moving forward in a much more open way, and
I really really appreciate it.
Speaker 5 (53:30):
Thank you. Bye.
Speaker 2 (53:32):
I'm really glad that Savannah started having these conversations that
are long overdue. It's really common when you're the caregiver
that you're afraid to talk about anything that's bothering you
because you feel like your concerns don't rank as high
on some kind of hierarchy of needs as your partners
who's struggling with the illness. What she saw is that
(53:53):
it helped both of them to be able to use
the menu. And now I think there's hope of being
able to be heard, being able to have their needs met,
and also being able to come closer to one another.
Speaker 3 (54:05):
I've worked with many people who've had chronic illnesses, and
it often comes back that when one person opens the door,
the other person goes, oh great, I'm dying to open the.
Speaker 2 (54:14):
Door right and doing it with the menu gives them
a structure for this, and even though the topics are
very serious, it also makes it a little bit fun,
like what am I going to choose from your menu today?
Speaker 3 (54:25):
I think that this is something all couples can use
because it's always a little bit of a tense point
when you want to have a discussion. So to come
and say, here's my menu, come up with one. We'll
do one of mine one time, one of yours another
time is a great way for couples to tackle hot
button or sensitive.
Speaker 1 (54:40):
Topics in the meantime.
Speaker 2 (54:42):
I think the support group would be very helpful for her,
and I just want to say that even though she
wasn't able to find a support group for caregivers specifically
related to sickle cell, I would urge her to just
go to a support group for caregivers in general. There
are many support groups out there for people who have
a partner who is ill. I think that caregivers have
(55:03):
a lot of overlap in terms of what they're going through.
Speaker 3 (55:05):
I agree, but my recommendation always is if you're looking
for support group for a specific thing and you can
find it, start one. Hey, fellow travelers, if you've used
any of our advice from the podcast in your own life,
send us a quick voice memo to Loridguy at iHeartMedia
(55:27):
dot com and tell us about it. We may include
it in a future show.
Speaker 2 (55:31):
And if you're enjoying our podcast each week, please help
support dear therapists. You can tell your friends about it,
and we'd be so grateful if you'd leave us a
five star review on Apple Podcasts. Your reviews help people
find the show.
Speaker 1 (55:44):
You can follow us both online.
Speaker 2 (55:46):
I'm at Lorigottlieb dot com and you can follow me
on Twitter at Lorigottlieb one or on Instagram at Lorigottlieb
Underscore Author.
Speaker 3 (55:55):
And I'm at Guywinch dot com. I'm on Twitter and
on Instagram at guywe If you have a dilemma you'd
like to discuss with us, big or small, email us
at Lorianguy at iHeartMedia dot Com.
Speaker 2 (56:08):
Our executive producers Christopher Hasiotis, were produced and edited by
Mike Johns. Special thanks to Samuel Benefield and to our
podcast Fairy Godmother Katie Couric. Dear Therapist is a production
of iHeartRadio.
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