August 6, 2025 • 32 mins
Justin is a husband, entrepreneur, and full-time caregiver to his wife, Shawna–– our very first podcast guest. In this episode, Justin talks about what it’s really like to care for someone you love. From juggling nonstop doctor visits to being the go-to advocate in every medical setting, Justin shares how he stays grounded, what keeps him going, and why self-care is survival.
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Speaker 1 (00:08):
Welcome back to Untold Stories Life with a severe autoimmune condition.
I'm Martine Hackett, and I'm so glad you're here. We're
visiting a familiar story this season. Back in season one,
in the first episode of this series, we featured Shauna,
a veteran living with MG. In that episode, Shawna shared
her powerful story of navigating her fight to be heard.
(00:29):
But today we hear from someone who's been beside her
every step of the way, her husband, Justin. Justin is
her caregiver, her advocate, and her partner for over a decade,
He's helped to manage the medical, emotional, and everyday challenges
of supporting someone who lives with MG, and because Shauna
is his wife, that care holds even deeper meaning and
(00:52):
even greater weight. In this episode, Justin opens up to
us about living in a constant state of readiness, the
quiet victories that can keep him going, and the strength
it takes to care for the person you love the most.
It's a powerful reminder of the untold stories behind every
MG journey. Hi, Justin, good morning, Good morning. My first
(01:13):
question is when you and Seanna first got together, you
knew she had health struggles, but neither of you knew
exactly what they were, so what was it like stepping
together into that unknown?
Speaker 2 (01:25):
I don't really know. Her health stuff just didn't scare me.
Her personality is what really drew me in. We met
on match. Back when online dating you didn't really talk
about it that much. Now everybody does it, but people
forget it wasn't a thing once upon a time. So
we had talked, but that first meeting in person, we
(01:47):
just had a real heart to heart. Within an hour
probably of meeting. She told me all the stuff about
her health and all the questions and all the unanswered questions, everything.
And I recently lost my job. I worked at a
paper mill at the time, and it was the beginning
of the end of that mal in my hometown. And
here I am, this unemployed guy. Here she has this
(02:09):
sick woman who we just laid it all out, and
it was kind of like, if you're not prepared for this,
then I totally get it. No hard feelings, but obviously
we were. And I think when you have that sort
of connection, you don't think about all the stuff you
might have to deal with in the future. You jests,
(02:30):
You're just kind of like, Okay, this is what we're doing,
and we went from there.
Speaker 1 (02:34):
Wow. Amazing. So you have mentioned that in your time
with Shauna that she is great at digging into the details.
I remember when we spoke how impressed I was that
she was so comfortable using like medical terminology. But you're
more of a big picture guy. Yes, So how has
that dynamic shaped and evolved how you approach caregiving?
Speaker 2 (02:55):
She loves the details, like loves them. But it works
out well because if I give her like a heads
up that we have to change some things in the
moment because the future is going to be negatively impacted,
she'll use that information to try to come up with
a way to continue doing what she's doing, but in
a way that's less impactful to her physically. And we
have a lot of those conversations because we have to.
(03:18):
She wants to push her limits constantly, and I hate
to be like the rev limitter. A lot of the
stuff I do is set up so that she can
live and do the things she wants to do. But
I also have to be realistic. Yeah, and I have
to remind her sometimes of things.
Speaker 1 (03:36):
You are that guardrail for her, you know, in terms
of her ability to move on.
Speaker 2 (03:41):
Yeah, and I miss things too, because.
Speaker 1 (03:44):
Just like in that moment, right, you're like, let's keep
doing this.
Speaker 2 (03:47):
Telling somebody that they can't do something is not comfortable.
Nobody wants to be told what to do, and I
don't want her to ever feel I'm trying to hold
her back. So you try to find a balance between
letting her find her limit but trying to not let
it get so far that she really is negatively impacted.
(04:07):
You're gonna miss sometimes, you're not going to hit one
hundred percent, because either you're going to limit somebody artificially,
or you're going to let them get a little bit
too far down the road, and then you have to
deal with the consequences.
Speaker 1 (04:23):
According to the National Alliance for Caregiving, over sixty percent
of family caregivers say they're constantly balancing between pushing their
loved one forward and pulling them back to protect their health.
It's a daily dance of love and limits. So it's
either like bad guy now, bad guy later.
Speaker 2 (04:40):
Yeah, exactly, that's a difficult tightrope sometimes.
Speaker 1 (04:43):
Speaking of that, you start recognizing signs when Shauna might
need rest or be heading towards a symptom flare. How
do you shift your role then as partner and caregiver
in those moments.
Speaker 2 (04:56):
A lot of that is physical. When she really I
have to take over a bigger physical role, which means
everything from having to help her move literally she has
to hold on to me sometimes, or having to help
her off of furniture or help her to the car
be literally the crutch. It might mean that she's not
(05:18):
moving very much, so I'm doing more work wise. It
could be fixing things like making the area more comfortable
so that she can still work while being laid up
because she doesn't ever want to stop. So over the years,
I've built those things into my life so if I
have to stop what I'm doing, I can transition into
(05:41):
those pretty quick and then go back to what I'm
doing own my own business. If I need to move
things around, I can. I work as a personal trainer.
I've literally done work from my phone while sitting in
a hospital, so I built that into my life, constantly
working to figure out how to make the house easier
for her to navigate even if she's having bad days.
(06:04):
If I say I have to be at the gym
because I have a session, we set it up so
she can be as safe as possible while I'm gone,
and then we build in other people if we need it.
Speaker 1 (06:15):
So it sounds like you really are a big picture
guy in that you're really imagining all these different scenarios
and planning for them and having backups when needed.
Speaker 2 (06:23):
Every time something goes wrong, we try to learn from it.
She was in the hospital for a week last month,
and we're learning from that. We're trying to figure out
not just how to navigate life when she has it,
but trying to figure out what led to it so
that we can avoid those things going forward. So it's
a constant learning about this illness.
Speaker 1 (06:44):
Speaking of being involved in her medical appointments and medical concerns,
what do you see as your most significant job When
you're attending medical appointments with Shauna.
Speaker 2 (06:55):
Helping fill in the gaps, It is hard to remember
everything that you have done or not done, or every
question that you might have had during a conversation between
the two of us, or something that was said to
a previous doctor. And I think a lot of times
I'll fill in gaps or answer questions, and then the
(07:17):
other thing I provide is an outsider's perspective, like she
sees what she goes through through her eyes. She feels
it physically. I see her from the outside, how her
body moves, how her face troops, how maybe her speech
changes or her diet changes, or the things that she
(07:40):
tells me how she's feeling versus what she might remember
how she was feeling in the moment. So I think
what I provide, more than anything, is another perspective that
medical providers can use to put pieces to the puzzle.
Speaker 1 (07:55):
And providing full picture of what she's going through.
Speaker 2 (07:59):
Yeah, obviously she's lived with us for twelve years, so
I've been a little bit involved in the medical side
of it, just because you're going to pick up things
along the way. So from the physical side, I have
a different perspective, especially when it comes to her movement.
So I try to provide as much of that as
possible because one of the things that happens with MG
or probably any illness I suspect, is not everything is connected.
(08:25):
And as much as you have to try to figure
out MG, you have to also understand that a lower
back issue from a previous injury my show is an
MG symptom, But is it an MG symptom? Is it
a physical symptom that we can actually work on in
(08:45):
a different way that might help with fatigue pain so
her body can work better to control the MG. So
you're trying to always sort out is this even an
MG thing or is this just a result of carrying
rock sacks for years while she was in the army.
One of the things I've noticed with MG, and I
know it happens with other illnesses too that require a
(09:06):
lot of sitting, you end up with issues from not
being able to get up and move. So yeah, I
think when it comes to her medical appointments, I'm a
third set of eyes, just trying to bring my experiences
with her to the appointments to help the doctors.
Speaker 1 (09:22):
And so in your time together, you've both had many
frustrating and disheartening moments in the diagnosis process. What advice
would you have for caregivers managing these real life healthcare experiences.
Speaker 2 (09:35):
I think sometimes she's not being believed she's the patient.
She's frustrated. One thing I have noticed which has been
very eye opening is I'm not small, like a fairly
big guy, but I think sometimes there have been times
when I have spoken with a little bit more like
(09:56):
base in my voice. No, there's something here, They pay
more attention. It's been very eye opening, and it's one
of those things where you're like, man, that shouldn't be
like that. But the same time, I also understand the
medical system is so completely overwhelmed with things at this point.
People come in with their own diagnosis from social media
(10:18):
and from WebMD, and I'm sure as a medical provider
that gets very frustrating, right, But Sean is very knowledgeable
about medical stuff, and that's something that needs to be
taken seriously, especially for somebody who's looking for answers. So
just being aware of who your patients are as people,
I think goes a long ways towards connecting that.
Speaker 1 (10:42):
It sounds like you're saying that caregivers can be that
extra level of support and enforcement in that clinical setting
to make physicians aware that this is real and this
is something that needs attention.
Speaker 2 (10:55):
Yeah, she's also my wife, so it's my job to
protect her and that being that advocate, being that person
in her corner when we're sitting at an appointment or
anywhere else. If I think someone is not treating her
the way I think she needs to be treated. It's
a tricky position to be in, but that's the job
(11:18):
of a caregiver.
Speaker 1 (11:19):
Who is often a family member, a close family member,
and having to navigate.
Speaker 3 (11:23):
Those roles one hundred percent.
Speaker 2 (11:26):
I think there's a difference between being a family caregiver
and being a caregiver who works for an agency. The
emotional connection just makes it different. And that's not to
take away from anybody who does any of it. Because
if you're in a caregiver, no matter what role, your
responsibility is to help take care of another human being.
Speaker 3 (11:44):
Like it's hard, it's hard.
Speaker 2 (11:47):
There's an emotional connection that is there regardless, but when
it's someone you're connected to through life, it's a little
bit different.
Speaker 1 (11:55):
And like you said, it changes too, right, depending on
what they're going through and your history and many things.
You mentioned how Shauna is very well versed in medical terminology,
and so when she started seeing patterns in her own
symptoms that led to her diagnosis of MG, you were
the one kind of pulling back the reins to make
(12:16):
sure that she didn't get her hopes.
Speaker 3 (12:17):
Up too soon.
Speaker 1 (12:19):
How do you balance supporting her while also protecting her,
especially from disappointment.
Speaker 2 (12:25):
I run in this a lot actually in my job too,
because people want to connect dots, especially with health stuff.
They want to connect dots, whether the dots connect or not.
So it's not don't do this, don't do this, don't
think this. It's more questions. Like by asking questions, I
think it gives validity to the things that the person
(12:47):
is telling you, Like I'm listening, what about this? And
what about this? Have you thought about this and considered this?
Because when we ask questions, it doesn't come across as
negating what the person is telling you, but it does
help people go, Okay, I need to not just look
at this this way because I found this information. I
(13:09):
need to look at it from multiple angles to make
sure that I'm not just seeing what I want to.
Speaker 1 (13:15):
See, letting your emotions take over and like you said,
fill in the blanks.
Speaker 2 (13:19):
Yeah, I mean we see that a lot now. People
are self diagnosing constantly, right, it's dangerous. It's like, oh,
somebody understands me, somebody sees what I'm going through. So
you're making these connections whether they're real or not. But
I think it's good to have somebody in your corner
that pumps the brakes to help you make sure that
(13:41):
you're not setting aside everything that you don't want to
hear and see and just so focused that it's like, no,
this is the thing.
Speaker 1 (13:48):
And that ability to sort of ask questions and to
really interrogate all of that again focuses a little bit
more on that big picture and then allows you to
not raise your expectations.
Speaker 3 (13:59):
Yes, got it, and at leads to a lot of
great conversations.
Speaker 1 (14:05):
We'll be back with more untold stories after a quick break.
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of people living with severe autoimmune conditions, Urgenics is dedicated
to serving the Mayasthenia Gravis or MG community through MG United.
(14:26):
MG United was created by Ergenics to empower the MG
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(14:49):
visit mgdashunited dot com. And now back to untold stories
and so thinking back then to when you finally got
that MG diagnosis, what was that like?
Speaker 2 (15:11):
First of all, a relief a huge relief so that
she could get treatment, and it was also a relief
like just seeing it on her face, like I've been
fighting for this and finally someone listened. Yeah, And it
was incredible that it came from her eye doctor. I
still remember that appointment and that drive home, But the
(15:35):
work wasn't done because then when she had her first
real myestinic crisis, it was like the two steps forward,
one step back situation, and that was incredibly frustrating, and
so there was relief and then you think you're kind
of over the hump and then you find out you're not.
So that made some of those appointments additionally frustrating. But
(15:58):
overall it has just gotten so much better, like now
she's getting treatment. It's just it's such a game changer
for life, of course, and it seems like MG is
growing now, like awareness has grown a lot in the
last five years, especially ten years, probably over the course
of the decade, which is great.
Speaker 1 (16:18):
Justin is right. In the past decade, awareness of MG
has grown significantly, but it's still considered rare, affecting just
twenty out of every one hundred thousand people, and for
many like Shauna, the journey to diagnosis can take years.
As a caregiver, a huge part of your role is
setting boundaries but also managing your own needs. And you
(16:41):
admitted that you have not taken a respite for over
a decade, So how has that impacted you physically, emotionally, mentally.
Speaker 2 (16:50):
A lot's happened in a decade. But I do things
daily that help me with all of this. I work
out pretty consistently. I like to run, I coach strength training.
I like to go work in the woods. I tell
people all the time, I can't hear the nonsense of
the world over the sound of a chainsaw.
Speaker 1 (17:11):
Studies show that twenty three percent of caregivers report their
own health as poor, and many like justin go years
without a true break. And when that caregiver is also
a spouse, you can imagine how deep that emotional toll runs.
Speaker 2 (17:26):
I write, I try to read right now. Reading has
been a little on the shelf, especially in the summer,
because I like to be outside while it's late. So
do those things to help me positively. Negatively, I've had
times where I was probably drinking too much as a
way to cope the emotional connection to food. Those are
not the best means of navigating all this. But I
(17:50):
think it happens to a lot of people, so trying
to be aware of that as big. I would never
recommend someone doesn't take rest. But the time I have
been away last year, I had to go away for
two weeks, but it was to navigate the passing my mother,
So I don't really count that as like downtime. So
I try to build respite into my life. It's never
(18:11):
going to be for days at a time, but just
try to go outside, try to go do this thing.
Speaker 3 (18:17):
Or go do that thing.
Speaker 1 (18:18):
Absolutely, and like you said, you know it's working for
you to be able to figure out how can you
incorporate it into your life. What are some of those
things that you wish you knew earlier about some of
those physical demands of caregiving.
Speaker 2 (18:30):
Your physical health impacts the person you're taking care of,
whether you even realize it or not. And it goes
well beyond whether or not you can pick them up
in an emergency, which obviously is That was one of
the big things that got me really back into training
back in twenty fifteen. I think it was when I
decided to start going back to the gym, was realizing,
(18:53):
like if we have an emergency, I'm not sure I
can respond in the way like I want to be
able to respond well if she falls in the shower.
Picking up somebody who can't help you pick themselves up
is a very difficult task, and I'm not sure a
lot of people understand the difference between picking up someone
(19:14):
who can assist and someone who can't. It's just it's
a lot different. But my mental and emotional health is
impacted by my physical health, as it is for everybody.
How you sleep impacts your ability to respond if you're hungry,
if you're wound up because you're eating a bunch of
sugar and then the sugar crash, that impacts what you
(19:37):
can do. It even impacts the conversations we have with people.
Speaker 1 (19:42):
How does that come to play with people that you
work with, what you've learned, I'm more empathetic.
Speaker 2 (19:48):
I think some of that comes with age. But to me,
the hardest part of starting a gym routine is walking
through the door of the first time starting.
Speaker 1 (19:57):
Yeah.
Speaker 2 (19:57):
Yes, And anybody who's willing to do that, especially at
my facility, if you're willing to come in, I will
find a way for you to be able to do
what we're doing. We will do whatever we have to
to get you started, because I've seen the difference it
can make. I don't believe it matters what illness or
injury someone has, they can improve, and I've seen it
(20:19):
with Shana. Sometimes it's literally ten minutes that's all she's
got because we have to understand what it looks like
on the back end for her recovery. So she'll come in,
she'll do ten minutes of something, and then the next
time she'll do ten minutes, and maybe by the end
of the month she's doing twelve to fifteen minutes. But
it's just doing what you can. And for me as
(20:40):
a coach, seeing her and seeing other people like that
come in with all of these things and just still
they do what they can, that is so inspiring. I
love it, absolutely love it. I coach real people. I
can coach athletes, but I'm just interested in coaching people
who just want to make their life better. That's what
I get excited about. And then I really get excited
(21:01):
about people who are navigating illnesses and injuries because I
already know their life is really hard, like really hard,
and they're coming in anyways, they're like, oh, I'm gonna
make it harder because I think it'll make it better.
Speaker 1 (21:13):
On the backhand, you're saying you get there and you
see them and you're able to help them.
Speaker 2 (21:19):
Oh man, it's incredible. There's no better feeling in the
world that someone comes in and as like I couldn't do
this thing before and now I can, Like as a coach,
that's the win to me.
Speaker 1 (21:31):
And So while you're definitely realistic, as you mentioned about
the challenges that you and Shauna face, you obviously also
maintain a really positive attitude. I remember from my conversation
with Shauna, she said, sometimes we have to get out
of our own way to live our best lives. And
so how do you acknowledge those challenging moments without letting
(21:51):
them consume you.
Speaker 2 (21:53):
So there's a retired Navy seal whose name's Jocko Willink,
and he has a podcast and one of the things
he was talking about once is this word good. He
puts it to like things that suck, and it's kind
of like, this thing happened to you good because there's
this opportunity on the back end of it and it's
(22:15):
something that I just was drawn to it, Like this
thing sucks, but what's the opportunity on the back end
of it? And let's be real, sometimes things are just awful,
Like they're just awful, and maybe there is no opportunity.
Speaker 3 (22:30):
Yep.
Speaker 2 (22:31):
But I think even in searching for the opportunity, maybe
it just shifts the mindset a little bit, just enough
so that you don't get stuck in that just life sucks.
It's never going to get better, this thing like a spiral.
And that's not to say I think sometimes we end
up with this overly positive thing too, which can also
(22:55):
be its own problem. Absolutely, it's okay to be realistic,
it's okay to acknowledge which this thing really sucks. Do
I wish that we didn't have to navigate MG and
that Shana was healthy and she could do all the
things she wants to do. Of course I do, like
that's the dream. Right when we talk about some of
(23:16):
the advancements potentially with AI and quantum computing, is like,
what are they going to do for medical science? Like
are we going to resolve these things that we've been
searching for for years? That would be amazing, But right
now that doesn't exist, right, so we have to deal
with what the reality is, and reality is she has
this thing. We have to figure out how to navigate it,
(23:38):
and constantly being depressed and frustrated doesn't help us do that.
Speaker 1 (23:44):
And like you said, saying good after those things also
forces you to ask questions. Like you had mentioned earlier,
it gives you that bigger perspective.
Speaker 2 (23:53):
Yes, we're big on questions in this house, like big
on questions.
Speaker 1 (23:57):
I remember Seana saying that that's what you know. With
you as her caregiver, it's forced you both to improve
your communication because you have to talk about hard.
Speaker 2 (24:04):
Things, oh all the time, and nobody wants to have
some of these conversations telling people things that they don't
want to hear.
Speaker 3 (24:12):
That's not fun.
Speaker 2 (24:13):
But you start to learn how to do it in
a way that's productive and not attacking.
Speaker 3 (24:18):
I see.
Speaker 2 (24:19):
And that goes a long way, and you're going to
screw it up along the way. You're not going to
get it right every time, yeah, because you can't, and
you're going to try to have the conversation that maybe
you're having it the right way at the wrong time.
That happens to me, yeah, yeah, But you have to communicate,
and you have to tell people things that they don't
(24:39):
want to hear sometimes, and you have to hear things
you don't want to hear sometimes. In addition to all this,
I had an accident in twenty sixteen that caused a
traumatic brain injury. I'm so much better now, and when
I look back at caregiving going through that and my
ability to caregive now, and then I look back at
(24:59):
my ability to care give when I was three hundred
and thirty pounds versus how I am now, I was
compromised as a caregiver in my ability to take care
of her the way I would want to.
Speaker 1 (25:13):
What impact would you say that hat on your life
with Shauna?
Speaker 2 (25:17):
I was hugely impactful. I don't remember big chunks of
the first year after the injury, so I did not
get very good care post injury, and that probably impacted
my recovery over the long term. Thankfully, I had an
occupational therapist who was also well versed in brain injuries
that I started working with a couple months after, and
(25:40):
she said, I couldn't tell you anything about your own
brain injury. She said, the only thing you were focused
on is making sure Seanna was taken care of. Wow,
she said that was if it negatively impacted that. She's like,
you weren't going to do it, so I had to
figure out how to get you to do things for
you to help your recovery. That didn't do that. She
(26:00):
said that was a challenge. I mean it impicked everything
from driving because I was the sole driver.
Speaker 3 (26:06):
In the house at the time.
Speaker 2 (26:07):
I know, it impacted my communication with her and with
my steps on, impacted my ability to focus, concentrate, speak,
I have no recollection.
Speaker 1 (26:18):
Yeah, of course. And it sounds like with your occupational therapist,
they realized that your caregiving was in the center of
your life and your recovery had to go through that.
Speaker 3 (26:26):
Everything had to go through that. Yep.
Speaker 1 (26:28):
And when you said that not being able to help
was one of the most challenging things. Can you talk
a little bit more about that.
Speaker 2 (26:35):
The breathing stuff for me is the worst, the absolute worst,
because I can't. I'm helpless. There's nothing beyond getting her
BYPAP or getting her to a medical facility or whatever
that is. In that moment, there's nothing, and that helpless
feeling is the most awful feeling when it comes to
(26:56):
the other caregiver, Stef. I can help her get up
the stairs, I can help her shower. I can help
her talk and work through emotional the emotional side of it.
I can help her with her business stuff like help
her with that. I can't help her breathe. I can't
help her muscles recover so that they can pick back
(27:19):
up and do their job to help with that, And
it's an awful, awful feeling. I would never wish on
anybody to witness that.
Speaker 1 (27:27):
Yeah, like you said, you're limited in terms of what
you can do.
Speaker 2 (27:31):
Yeah, you're just watching this person you care about literally
not be able to do one of the main things
to keep them alive, and you're helpless when she got
COVID in twenty twenty two. Is awful watching her go
through that, And we did what we had to do.
But yeah, that was the scariest time of my life.
And that's just an awful feeling to be that helpless
(27:54):
and to feel like there's nothing anybody else can do.
Speaker 1 (27:57):
Yeah, So what has helped you? And I want to
stay connected even when those challenges, these health challenges get
in the way.
Speaker 2 (28:05):
Probably just the hope of a better future. Sometimes you
have to change what that future looks like. But we're
always talking about things we want to do and how
we want to do them, and we really like to
come up with ways that how can we use our
experience help other people? And I think that provides some excitement.
(28:26):
I think doing that together has played a significant role
in keeping us together because it also keeps us talking.
I don't know if it's because of me or not,
but I definitely try to make sure that what needs
to be taken care of so she can do those things,
Like that's my focus is to do those things so
that she can do what she can do. I do
(28:48):
ninety five percent of the housework. And it's funny, we
just had this conversation a while ago and she's like,
I want to be able to help with the housework more,
and I said, I don't want you to. That stuff
doesn't bother me, like physically doesn't wear me out to
do the day and do these things, but it does you.
And I said, if you do that stuff, you can't
do this other stuff that I can't do. I said,
So one of the things we've really tried to figure
(29:10):
out as far as the household goes, is like where
are our strengths and then we try to separate things
like that. I don't know if that's a caregiver thing
or that seems more like a marriage thing. To me,
that is one of the ways I've really promoted with her, Like,
there's no sense for you to do the dishes. I
can put dishes away, I can wash the dishes, I
(29:33):
can do the laundry. That's not a big deal. Not
doing those things means you won't get physically worn out,
means you won't be negative impacted for doing the things
you're trying to do.
Speaker 1 (29:42):
Yeah, and do the things that you can do now
because you have that freed up.
Speaker 2 (29:46):
We've got to manage that energy. Why waste it?
Speaker 1 (29:49):
Yeah, So justin would have been some of your favorite
moments as a caregiver.
Speaker 2 (29:55):
Well, the day she got the diagnosis, for sure, that
was a big one. Her getting pushed halfway down the
aisle and then walking the last steps. When we got married,
I remember that pretty vividly.
Speaker 1 (30:05):
Wow.
Speaker 2 (30:06):
Her going back to work, like starting back to work now,
that's how it's ups and downs, for sure, But just
her understanding like I can't do things so I used
to do it, but I can still do things. That's
pretty awesome feeling thing to see.
Speaker 1 (30:23):
Well, it sounds like also too, like just by providing
that support around her, that you're allowing her to have
that sense of pride in the work that she does,
to be able to actually do it, or to really
just think about that she can get through these difficult
moments because of you. Yeah, Justin, thank you so much
for this conversation and for providing this important insight into
(30:48):
the role of a caregiver in dealing with a chronic
autoimmune condition.
Speaker 3 (30:53):
Well, thank you for having me. I appreciate it.
Speaker 1 (30:59):
Justin's story reminds us that caregiving is about so much
more than a to do list. It's about love, resilience,
and showing up in the hardest moments. His honesty highlights
the strength it takes to support someone you love through
their darkest moments. Thanks for listening to Untold Stories Life
with a Severe Autoimmune Condition. If Justin's experience resonated with you,
(31:21):
join us every other week for more, and please rate
and review so others can find these important stories. We'll
see you next time on Untold Stories. Untold Stories Life
with a Severe Autoimmune Condition is produced by Ruby's Studio
from iHeartMedia in partnership with Argenix, and hosted by me
(31:41):
Martine Hackett. Our executive producer is Yvonne Shehan. Our producer
is Leah Sutherland. This episode was written and produced by
Diana Davis. Post production for this season is by Tom
Sullivan and Paul Videlein's of Audiography
Welcome back to Untold Stories Life with a severe autoimmune condition.
I'm Martine Hackett, and I'm so glad you're here. We're
visiting a familiar story this season. Back in season one,
in the first episode of this series, we featured Shauna,
a veteran living with MG. In that episode, Shawna shared
her powerful story of navigating her fight to be heard.
(00:29):
But today we hear from someone who's been beside her
every step of the way, her husband, Justin. Justin is
her caregiver, her advocate, and her partner for over a decade,
He's helped to manage the medical, emotional, and everyday challenges
of supporting someone who lives with MG, and because Shauna
is his wife, that care holds even deeper meaning and
(00:52):
even greater weight. In this episode, Justin opens up to
us about living in a constant state of readiness, the
quiet victories that can keep him going, and the strength
it takes to care for the person you love the most.
It's a powerful reminder of the untold stories behind every
MG journey. Hi, Justin, good morning, Good morning. My first
(01:13):
question is when you and Seanna first got together, you
knew she had health struggles, but neither of you knew
exactly what they were, so what was it like stepping
together into that unknown?
Speaker 2 (01:25):
I don't really know. Her health stuff just didn't scare me.
Her personality is what really drew me in. We met
on match. Back when online dating you didn't really talk
about it that much. Now everybody does it, but people
forget it wasn't a thing once upon a time. So
we had talked, but that first meeting in person, we
(01:47):
just had a real heart to heart. Within an hour
probably of meeting. She told me all the stuff about
her health and all the questions and all the unanswered questions, everything.
And I recently lost my job. I worked at a
paper mill at the time, and it was the beginning
of the end of that mal in my hometown. And
here I am, this unemployed guy. Here she has this
(02:09):
sick woman who we just laid it all out, and
it was kind of like, if you're not prepared for this,
then I totally get it. No hard feelings, but obviously
we were. And I think when you have that sort
of connection, you don't think about all the stuff you
might have to deal with in the future. You jests,
(02:30):
You're just kind of like, Okay, this is what we're doing,
and we went from there.
Speaker 1 (02:34):
Wow. Amazing. So you have mentioned that in your time
with Shauna that she is great at digging into the details.
I remember when we spoke how impressed I was that
she was so comfortable using like medical terminology. But you're
more of a big picture guy. Yes, So how has
that dynamic shaped and evolved how you approach caregiving?
Speaker 2 (02:55):
She loves the details, like loves them. But it works
out well because if I give her like a heads
up that we have to change some things in the
moment because the future is going to be negatively impacted,
she'll use that information to try to come up with
a way to continue doing what she's doing, but in
a way that's less impactful to her physically. And we
have a lot of those conversations because we have to.
(03:18):
She wants to push her limits constantly, and I hate
to be like the rev limitter. A lot of the
stuff I do is set up so that she can
live and do the things she wants to do. But
I also have to be realistic. Yeah, and I have
to remind her sometimes of things.
Speaker 1 (03:36):
You are that guardrail for her, you know, in terms
of her ability to move on.
Speaker 2 (03:41):
Yeah, and I miss things too, because.
Speaker 1 (03:44):
Just like in that moment, right, you're like, let's keep
doing this.
Speaker 2 (03:47):
Telling somebody that they can't do something is not comfortable.
Nobody wants to be told what to do, and I
don't want her to ever feel I'm trying to hold
her back. So you try to find a balance between
letting her find her limit but trying to not let
it get so far that she really is negatively impacted.
(04:07):
You're gonna miss sometimes, you're not going to hit one
hundred percent, because either you're going to limit somebody artificially,
or you're going to let them get a little bit
too far down the road, and then you have to
deal with the consequences.
Speaker 1 (04:23):
According to the National Alliance for Caregiving, over sixty percent
of family caregivers say they're constantly balancing between pushing their
loved one forward and pulling them back to protect their health.
It's a daily dance of love and limits. So it's
either like bad guy now, bad guy later.
Speaker 2 (04:40):
Yeah, exactly, that's a difficult tightrope sometimes.
Speaker 1 (04:43):
Speaking of that, you start recognizing signs when Shauna might
need rest or be heading towards a symptom flare. How
do you shift your role then as partner and caregiver
in those moments.
Speaker 2 (04:56):
A lot of that is physical. When she really I
have to take over a bigger physical role, which means
everything from having to help her move literally she has
to hold on to me sometimes, or having to help
her off of furniture or help her to the car
be literally the crutch. It might mean that she's not
(05:18):
moving very much, so I'm doing more work wise. It
could be fixing things like making the area more comfortable
so that she can still work while being laid up
because she doesn't ever want to stop. So over the years,
I've built those things into my life so if I
have to stop what I'm doing, I can transition into
(05:41):
those pretty quick and then go back to what I'm
doing own my own business. If I need to move
things around, I can. I work as a personal trainer.
I've literally done work from my phone while sitting in
a hospital, so I built that into my life, constantly
working to figure out how to make the house easier
for her to navigate even if she's having bad days.
(06:04):
If I say I have to be at the gym
because I have a session, we set it up so
she can be as safe as possible while I'm gone,
and then we build in other people if we need it.
Speaker 1 (06:15):
So it sounds like you really are a big picture
guy in that you're really imagining all these different scenarios
and planning for them and having backups when needed.
Speaker 2 (06:23):
Every time something goes wrong, we try to learn from it.
She was in the hospital for a week last month,
and we're learning from that. We're trying to figure out
not just how to navigate life when she has it,
but trying to figure out what led to it so
that we can avoid those things going forward. So it's
a constant learning about this illness.
Speaker 1 (06:44):
Speaking of being involved in her medical appointments and medical concerns,
what do you see as your most significant job When
you're attending medical appointments with Shauna.
Speaker 2 (06:55):
Helping fill in the gaps, It is hard to remember
everything that you have done or not done, or every
question that you might have had during a conversation between
the two of us, or something that was said to
a previous doctor. And I think a lot of times
I'll fill in gaps or answer questions, and then the
(07:17):
other thing I provide is an outsider's perspective, like she
sees what she goes through through her eyes. She feels
it physically. I see her from the outside, how her
body moves, how her face troops, how maybe her speech
changes or her diet changes, or the things that she
(07:40):
tells me how she's feeling versus what she might remember
how she was feeling in the moment. So I think
what I provide, more than anything, is another perspective that
medical providers can use to put pieces to the puzzle.
Speaker 1 (07:55):
And providing full picture of what she's going through.
Speaker 2 (07:59):
Yeah, obviously she's lived with us for twelve years, so
I've been a little bit involved in the medical side
of it, just because you're going to pick up things
along the way. So from the physical side, I have
a different perspective, especially when it comes to her movement.
So I try to provide as much of that as
possible because one of the things that happens with MG
or probably any illness I suspect, is not everything is connected.
(08:25):
And as much as you have to try to figure
out MG, you have to also understand that a lower
back issue from a previous injury my show is an
MG symptom, But is it an MG symptom? Is it
a physical symptom that we can actually work on in
(08:45):
a different way that might help with fatigue pain so
her body can work better to control the MG. So
you're trying to always sort out is this even an
MG thing or is this just a result of carrying
rock sacks for years while she was in the army.
One of the things I've noticed with MG, and I
know it happens with other illnesses too that require a
(09:06):
lot of sitting, you end up with issues from not
being able to get up and move. So yeah, I
think when it comes to her medical appointments, I'm a
third set of eyes, just trying to bring my experiences
with her to the appointments to help the doctors.
Speaker 1 (09:22):
And so in your time together, you've both had many
frustrating and disheartening moments in the diagnosis process. What advice
would you have for caregivers managing these real life healthcare experiences.
Speaker 2 (09:35):
I think sometimes she's not being believed she's the patient.
She's frustrated. One thing I have noticed which has been
very eye opening is I'm not small, like a fairly
big guy, but I think sometimes there have been times
when I have spoken with a little bit more like
(09:56):
base in my voice. No, there's something here, They pay
more attention. It's been very eye opening, and it's one
of those things where you're like, man, that shouldn't be
like that. But the same time, I also understand the
medical system is so completely overwhelmed with things at this point.
People come in with their own diagnosis from social media
(10:18):
and from WebMD, and I'm sure as a medical provider
that gets very frustrating, right, But Sean is very knowledgeable
about medical stuff, and that's something that needs to be
taken seriously, especially for somebody who's looking for answers. So
just being aware of who your patients are as people,
I think goes a long ways towards connecting that.
Speaker 1 (10:42):
It sounds like you're saying that caregivers can be that
extra level of support and enforcement in that clinical setting
to make physicians aware that this is real and this
is something that needs attention.
Speaker 2 (10:55):
Yeah, she's also my wife, so it's my job to
protect her and that being that advocate, being that person
in her corner when we're sitting at an appointment or
anywhere else. If I think someone is not treating her
the way I think she needs to be treated. It's
a tricky position to be in, but that's the job
(11:18):
of a caregiver.
Speaker 1 (11:19):
Who is often a family member, a close family member,
and having to navigate.
Speaker 3 (11:23):
Those roles one hundred percent.
Speaker 2 (11:26):
I think there's a difference between being a family caregiver
and being a caregiver who works for an agency. The
emotional connection just makes it different. And that's not to
take away from anybody who does any of it. Because
if you're in a caregiver, no matter what role, your
responsibility is to help take care of another human being.
Speaker 3 (11:44):
Like it's hard, it's hard.
Speaker 2 (11:47):
There's an emotional connection that is there regardless, but when
it's someone you're connected to through life, it's a little
bit different.
Speaker 1 (11:55):
And like you said, it changes too, right, depending on
what they're going through and your history and many things.
You mentioned how Shauna is very well versed in medical terminology,
and so when she started seeing patterns in her own
symptoms that led to her diagnosis of MG, you were
the one kind of pulling back the reins to make
(12:16):
sure that she didn't get her hopes.
Speaker 3 (12:17):
Up too soon.
Speaker 1 (12:19):
How do you balance supporting her while also protecting her,
especially from disappointment.
Speaker 2 (12:25):
I run in this a lot actually in my job too,
because people want to connect dots, especially with health stuff.
They want to connect dots, whether the dots connect or not.
So it's not don't do this, don't do this, don't
think this. It's more questions. Like by asking questions, I
think it gives validity to the things that the person
(12:47):
is telling you, Like I'm listening, what about this? And
what about this? Have you thought about this and considered this?
Because when we ask questions, it doesn't come across as
negating what the person is telling you, but it does
help people go, Okay, I need to not just look
at this this way because I found this information. I
(13:09):
need to look at it from multiple angles to make
sure that I'm not just seeing what I want to.
Speaker 1 (13:15):
See, letting your emotions take over and like you said,
fill in the blanks.
Speaker 2 (13:19):
Yeah, I mean we see that a lot now. People
are self diagnosing constantly, right, it's dangerous. It's like, oh,
somebody understands me, somebody sees what I'm going through. So
you're making these connections whether they're real or not. But
I think it's good to have somebody in your corner
that pumps the brakes to help you make sure that
(13:41):
you're not setting aside everything that you don't want to
hear and see and just so focused that it's like, no,
this is the thing.
Speaker 1 (13:48):
And that ability to sort of ask questions and to
really interrogate all of that again focuses a little bit
more on that big picture and then allows you to
not raise your expectations.
Speaker 3 (13:59):
Yes, got it, and at leads to a lot of
great conversations.
Speaker 1 (14:05):
We'll be back with more untold stories after a quick break.
As a global immunology company committed to improving the lives
of people living with severe autoimmune conditions, Urgenics is dedicated
to serving the Mayasthenia Gravis or MG community through MG United.
(14:26):
MG United was created by Ergenics to empower the MG
community by providing the latest information, resources, and support to
address the unique ways MG can affect their lives. It
also helps you connect with the community and see real
stories of real people living with MG wherever you are
in your myasthenia Gravis journey. MG United wants to help
make today a better day. For more information about MG United,
(14:49):
visit mgdashunited dot com. And now back to untold stories
and so thinking back then to when you finally got
that MG diagnosis, what was that like?
Speaker 2 (15:11):
First of all, a relief a huge relief so that
she could get treatment, and it was also a relief
like just seeing it on her face, like I've been
fighting for this and finally someone listened. Yeah, And it
was incredible that it came from her eye doctor. I
still remember that appointment and that drive home, But the
(15:35):
work wasn't done because then when she had her first
real myestinic crisis, it was like the two steps forward,
one step back situation, and that was incredibly frustrating, and
so there was relief and then you think you're kind
of over the hump and then you find out you're not.
So that made some of those appointments additionally frustrating. But
(15:58):
overall it has just gotten so much better, like now
she's getting treatment. It's just it's such a game changer
for life, of course, and it seems like MG is
growing now, like awareness has grown a lot in the
last five years, especially ten years, probably over the course
of the decade, which is great.
Speaker 1 (16:18):
Justin is right. In the past decade, awareness of MG
has grown significantly, but it's still considered rare, affecting just
twenty out of every one hundred thousand people, and for
many like Shauna, the journey to diagnosis can take years.
As a caregiver, a huge part of your role is
setting boundaries but also managing your own needs. And you
(16:41):
admitted that you have not taken a respite for over
a decade, So how has that impacted you physically, emotionally, mentally.
Speaker 2 (16:50):
A lot's happened in a decade. But I do things
daily that help me with all of this. I work
out pretty consistently. I like to run, I coach strength training.
I like to go work in the woods. I tell
people all the time, I can't hear the nonsense of
the world over the sound of a chainsaw.
Speaker 1 (17:11):
Studies show that twenty three percent of caregivers report their
own health as poor, and many like justin go years
without a true break. And when that caregiver is also
a spouse, you can imagine how deep that emotional toll runs.
Speaker 2 (17:26):
I write, I try to read right now. Reading has
been a little on the shelf, especially in the summer,
because I like to be outside while it's late. So
do those things to help me positively. Negatively, I've had
times where I was probably drinking too much as a
way to cope the emotional connection to food. Those are
not the best means of navigating all this. But I
(17:50):
think it happens to a lot of people, so trying
to be aware of that as big. I would never
recommend someone doesn't take rest. But the time I have
been away last year, I had to go away for
two weeks, but it was to navigate the passing my mother,
So I don't really count that as like downtime. So
I try to build respite into my life. It's never
(18:11):
going to be for days at a time, but just
try to go outside, try to go do this thing.
Speaker 3 (18:17):
Or go do that thing.
Speaker 1 (18:18):
Absolutely, and like you said, you know it's working for
you to be able to figure out how can you
incorporate it into your life. What are some of those
things that you wish you knew earlier about some of
those physical demands of caregiving.
Speaker 2 (18:30):
Your physical health impacts the person you're taking care of,
whether you even realize it or not. And it goes
well beyond whether or not you can pick them up
in an emergency, which obviously is That was one of
the big things that got me really back into training
back in twenty fifteen. I think it was when I
decided to start going back to the gym, was realizing,
(18:53):
like if we have an emergency, I'm not sure I
can respond in the way like I want to be
able to respond well if she falls in the shower.
Picking up somebody who can't help you pick themselves up
is a very difficult task, and I'm not sure a
lot of people understand the difference between picking up someone
(19:14):
who can assist and someone who can't. It's just it's
a lot different. But my mental and emotional health is
impacted by my physical health, as it is for everybody.
How you sleep impacts your ability to respond if you're hungry,
if you're wound up because you're eating a bunch of
sugar and then the sugar crash, that impacts what you
(19:37):
can do. It even impacts the conversations we have with people.
Speaker 1 (19:42):
How does that come to play with people that you
work with, what you've learned, I'm more empathetic.
Speaker 2 (19:48):
I think some of that comes with age. But to me,
the hardest part of starting a gym routine is walking
through the door of the first time starting.
Speaker 1 (19:57):
Yeah.
Speaker 2 (19:57):
Yes, And anybody who's willing to do that, especially at
my facility, if you're willing to come in, I will
find a way for you to be able to do
what we're doing. We will do whatever we have to
to get you started, because I've seen the difference it
can make. I don't believe it matters what illness or
injury someone has, they can improve, and I've seen it
(20:19):
with Shana. Sometimes it's literally ten minutes that's all she's
got because we have to understand what it looks like
on the back end for her recovery. So she'll come in,
she'll do ten minutes of something, and then the next
time she'll do ten minutes, and maybe by the end
of the month she's doing twelve to fifteen minutes. But
it's just doing what you can. And for me as
(20:40):
a coach, seeing her and seeing other people like that
come in with all of these things and just still
they do what they can, that is so inspiring. I
love it, absolutely love it. I coach real people. I
can coach athletes, but I'm just interested in coaching people
who just want to make their life better. That's what
I get excited about. And then I really get excited
(21:01):
about people who are navigating illnesses and injuries because I
already know their life is really hard, like really hard,
and they're coming in anyways, they're like, oh, I'm gonna
make it harder because I think it'll make it better.
Speaker 1 (21:13):
On the backhand, you're saying you get there and you
see them and you're able to help them.
Speaker 2 (21:19):
Oh man, it's incredible. There's no better feeling in the
world that someone comes in and as like I couldn't do
this thing before and now I can, Like as a coach,
that's the win to me.
Speaker 1 (21:31):
And So while you're definitely realistic, as you mentioned about
the challenges that you and Shauna face, you obviously also
maintain a really positive attitude. I remember from my conversation
with Shauna, she said, sometimes we have to get out
of our own way to live our best lives. And
so how do you acknowledge those challenging moments without letting
(21:51):
them consume you.
Speaker 2 (21:53):
So there's a retired Navy seal whose name's Jocko Willink,
and he has a podcast and one of the things
he was talking about once is this word good. He
puts it to like things that suck, and it's kind
of like, this thing happened to you good because there's
this opportunity on the back end of it and it's
(22:15):
something that I just was drawn to it, Like this
thing sucks, but what's the opportunity on the back end
of it? And let's be real, sometimes things are just awful,
Like they're just awful, and maybe there is no opportunity.
Speaker 3 (22:30):
Yep.
Speaker 2 (22:31):
But I think even in searching for the opportunity, maybe
it just shifts the mindset a little bit, just enough
so that you don't get stuck in that just life sucks.
It's never going to get better, this thing like a spiral.
And that's not to say I think sometimes we end
up with this overly positive thing too, which can also
(22:55):
be its own problem. Absolutely, it's okay to be realistic,
it's okay to acknowledge which this thing really sucks. Do
I wish that we didn't have to navigate MG and
that Shana was healthy and she could do all the
things she wants to do. Of course I do, like
that's the dream. Right when we talk about some of
(23:16):
the advancements potentially with AI and quantum computing, is like,
what are they going to do for medical science? Like
are we going to resolve these things that we've been
searching for for years? That would be amazing, But right
now that doesn't exist, right, so we have to deal
with what the reality is, and reality is she has
this thing. We have to figure out how to navigate it,
(23:38):
and constantly being depressed and frustrated doesn't help us do that.
Speaker 1 (23:44):
And like you said, saying good after those things also
forces you to ask questions. Like you had mentioned earlier,
it gives you that bigger perspective.
Speaker 2 (23:53):
Yes, we're big on questions in this house, like big
on questions.
Speaker 1 (23:57):
I remember Seana saying that that's what you know. With
you as her caregiver, it's forced you both to improve
your communication because you have to talk about hard.
Speaker 2 (24:04):
Things, oh all the time, and nobody wants to have
some of these conversations telling people things that they don't
want to hear.
Speaker 3 (24:12):
That's not fun.
Speaker 2 (24:13):
But you start to learn how to do it in
a way that's productive and not attacking.
Speaker 3 (24:18):
I see.
Speaker 2 (24:19):
And that goes a long way, and you're going to
screw it up along the way. You're not going to
get it right every time, yeah, because you can't, and
you're going to try to have the conversation that maybe
you're having it the right way at the wrong time.
That happens to me, yeah, yeah, But you have to communicate,
and you have to tell people things that they don't
(24:39):
want to hear sometimes, and you have to hear things
you don't want to hear sometimes. In addition to all this,
I had an accident in twenty sixteen that caused a
traumatic brain injury. I'm so much better now, and when
I look back at caregiving going through that and my
ability to caregive now, and then I look back at
(24:59):
my ability to care give when I was three hundred
and thirty pounds versus how I am now, I was
compromised as a caregiver in my ability to take care
of her the way I would want to.
Speaker 1 (25:13):
What impact would you say that hat on your life
with Shauna?
Speaker 2 (25:17):
I was hugely impactful. I don't remember big chunks of
the first year after the injury, so I did not
get very good care post injury, and that probably impacted
my recovery over the long term. Thankfully, I had an
occupational therapist who was also well versed in brain injuries
that I started working with a couple months after, and
(25:40):
she said, I couldn't tell you anything about your own
brain injury. She said, the only thing you were focused
on is making sure Seanna was taken care of. Wow,
she said that was if it negatively impacted that. She's like,
you weren't going to do it, so I had to
figure out how to get you to do things for
you to help your recovery. That didn't do that. She
(26:00):
said that was a challenge. I mean it impicked everything
from driving because I was the sole driver.
Speaker 3 (26:06):
In the house at the time.
Speaker 2 (26:07):
I know, it impacted my communication with her and with
my steps on, impacted my ability to focus, concentrate, speak,
I have no recollection.
Speaker 1 (26:18):
Yeah, of course. And it sounds like with your occupational therapist,
they realized that your caregiving was in the center of
your life and your recovery had to go through that.
Speaker 3 (26:26):
Everything had to go through that. Yep.
Speaker 1 (26:28):
And when you said that not being able to help
was one of the most challenging things. Can you talk
a little bit more about that.
Speaker 2 (26:35):
The breathing stuff for me is the worst, the absolute worst,
because I can't. I'm helpless. There's nothing beyond getting her
BYPAP or getting her to a medical facility or whatever
that is. In that moment, there's nothing, and that helpless
feeling is the most awful feeling when it comes to
(26:56):
the other caregiver, Stef. I can help her get up
the stairs, I can help her shower. I can help
her talk and work through emotional the emotional side of it.
I can help her with her business stuff like help
her with that. I can't help her breathe. I can't
help her muscles recover so that they can pick back
(27:19):
up and do their job to help with that, And
it's an awful, awful feeling. I would never wish on
anybody to witness that.
Speaker 1 (27:27):
Yeah, like you said, you're limited in terms of what
you can do.
Speaker 2 (27:31):
Yeah, you're just watching this person you care about literally
not be able to do one of the main things
to keep them alive, and you're helpless when she got
COVID in twenty twenty two. Is awful watching her go
through that, And we did what we had to do.
But yeah, that was the scariest time of my life.
And that's just an awful feeling to be that helpless
(27:54):
and to feel like there's nothing anybody else can do.
Speaker 1 (27:57):
Yeah, So what has helped you? And I want to
stay connected even when those challenges, these health challenges get
in the way.
Speaker 2 (28:05):
Probably just the hope of a better future. Sometimes you
have to change what that future looks like. But we're
always talking about things we want to do and how
we want to do them, and we really like to
come up with ways that how can we use our
experience help other people? And I think that provides some excitement.
(28:26):
I think doing that together has played a significant role
in keeping us together because it also keeps us talking.
I don't know if it's because of me or not,
but I definitely try to make sure that what needs
to be taken care of so she can do those things,
Like that's my focus is to do those things so
that she can do what she can do. I do
(28:48):
ninety five percent of the housework. And it's funny, we
just had this conversation a while ago and she's like,
I want to be able to help with the housework more,
and I said, I don't want you to. That stuff
doesn't bother me, like physically doesn't wear me out to
do the day and do these things, but it does you.
And I said, if you do that stuff, you can't
do this other stuff that I can't do. I said,
So one of the things we've really tried to figure
(29:10):
out as far as the household goes, is like where
are our strengths and then we try to separate things
like that. I don't know if that's a caregiver thing
or that seems more like a marriage thing. To me,
that is one of the ways I've really promoted with her, Like,
there's no sense for you to do the dishes. I
can put dishes away, I can wash the dishes, I
(29:33):
can do the laundry. That's not a big deal. Not
doing those things means you won't get physically worn out,
means you won't be negative impacted for doing the things
you're trying to do.
Speaker 1 (29:42):
Yeah, and do the things that you can do now
because you have that freed up.
Speaker 2 (29:46):
We've got to manage that energy. Why waste it?
Speaker 1 (29:49):
Yeah, So justin would have been some of your favorite
moments as a caregiver.
Speaker 2 (29:55):
Well, the day she got the diagnosis, for sure, that
was a big one. Her getting pushed halfway down the
aisle and then walking the last steps. When we got married,
I remember that pretty vividly.
Speaker 1 (30:05):
Wow.
Speaker 2 (30:06):
Her going back to work, like starting back to work now,
that's how it's ups and downs, for sure, But just
her understanding like I can't do things so I used
to do it, but I can still do things. That's
pretty awesome feeling thing to see.
Speaker 1 (30:23):
Well, it sounds like also too, like just by providing
that support around her, that you're allowing her to have
that sense of pride in the work that she does,
to be able to actually do it, or to really
just think about that she can get through these difficult
moments because of you. Yeah, Justin, thank you so much
for this conversation and for providing this important insight into
(30:48):
the role of a caregiver in dealing with a chronic
autoimmune condition.
Speaker 3 (30:53):
Well, thank you for having me. I appreciate it.
Speaker 1 (30:59):
Justin's story reminds us that caregiving is about so much
more than a to do list. It's about love, resilience,
and showing up in the hardest moments. His honesty highlights
the strength it takes to support someone you love through
their darkest moments. Thanks for listening to Untold Stories Life
with a Severe Autoimmune Condition. If Justin's experience resonated with you,
(31:21):
join us every other week for more, and please rate
and review so others can find these important stories. We'll
see you next time on Untold Stories. Untold Stories Life
with a Severe Autoimmune Condition is produced by Ruby's Studio
from iHeartMedia in partnership with Argenix, and hosted by me
(31:41):
Martine Hackett. Our executive producer is Yvonne Shehan. Our producer
is Leah Sutherland. This episode was written and produced by
Diana Davis. Post production for this season is by Tom
Sullivan and Paul Videlein's of Audiography
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