April 7, 2025 • 32 mins
Struggling with the challenges of invisible disabilities? Join us as Maggie Cavanaugh, a National Certified Counselor living with postural orthostatic tachycardia syndrome (POTS), reveals her transformative journey from an advertising career to becoming a counselor. Diagnosed at just 14, Maggie navigates the complexities of mental health and chronic illness with empathy, sharing her insights on overcoming disparities in income and workplace stigma. Her story unfolds with a heartening look at how the COVID-19 pandemic inspired her to pivot and support those feeling isolated, highlighting the importance of empathy and understanding.
Meet Andy, a remarkable advocate living with multiple invisible disabilities, who demonstrates the power of resilience and self-advocacy. Blindness, deafness, and autoimmune diseases have not stopped Andy from championing the necessity of strength-based, solution-focused strategies both personally and professionally. Their wisdom extends to the role of understanding healthcare providers and the critical support of family and partners. Andy's connection with the Spoonie community underscores the importance of collaborative networks, as they share strategies for empowerment and fostering genuine support systems.
Maggie and Andy shine a light on self-care and community as cornerstones of managing chronic illness. They explore turning self-criticism into self-compassion, setting boundaries, and embracing empowerment. Their stories remind us of the resilience found in authentic connections and the transformative power of understanding and support. As we express gratitude to the Spoonie community, the episode culminates in a tribute to the strength and inspiration drawn from shared experiences, leaving listeners with a sense of belonging and encouragement to cherish their perseverance.
Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Welcome back to my Spoonie Sisters Podcast.
Welcome Maggie Cavanaugh, aNational Certified Counselor
with a passion for helpingindividuals navigate the
complexities of mental healthand invisible disabilities.
Since beginning her work in themental health field in 2022,
maggie has worked in school andprivate practice settings,
(00:21):
counseling individuals, couplesand families through life
transitions, trauma and beyond.
Since 2012, she has been livingwith postural orthostatic
tachycardia syndrome Most of usknow it as POTS, an invisible
disability that informs andfuels her commitment to helping
others in the chronic illnesscommunity find resilience and
(00:43):
advocacy in their own journeys.
Today we're going to exploreMaggie's story, her insights and
advice for spoonies who arenavigating the intersections of
mental health and chronicillness.
We are joined with the one andonly Andy Byers co-host today.
Thank you both for being here.
Maggie, how are you today?
Speaker 2 (01:02):
I'm doing well.
How are you?
I am well.
Speaker 1 (01:03):
Andy, how are you today?
I'm doing well.
How are you?
I am well.
Andy, how are you today?
Speaker 3 (01:06):
Fabulous, I am happy to have a pot yawn, so I have a
new bestie and we could talk allabout it.
Speaker 1 (01:11):
I know I was excited and I can't wait to listen to
everything you both have toshare.
Speaker 3 (01:16):
Maggie, can you share a little bit about your journey
with pots?
How has living with it been foryou?
How has it shaped yourperspective?
Speaker 2 (01:23):
Yes, I was diagnosed when I was 14, which I believe
is about the average age forsomeone to be diagnosed with
POTS.
So it started off one day withme randomly passing out and
going to the doctors to see whatoccurred.
It took about four months toget a diagnosis.
There was a lot of misdiagnoses.
A lot of it's just mentalhealth, it's just your anxiety.
(01:45):
But I have an incredible mom whois a nurse who was like I don't
think what she's being told iscorrect.
So she did a lot of research onthe symptoms I was having and
found a pot specialist out atJohns Hopkins and reached out to
this doctor and talked to himabout what I was experiencing.
She brought it back to thecardiologist and neurologist
that I was seeing by me in thePhiladelphia area.
(02:06):
We finally got a diagnosis ofCOTS.
I think professionally andpersonally it's definitely
affected me and I think at thecore it's just given me a lot
more empathy.
I look at life through a lensof wanting to walk the journey
with people through empathyrather than against them through
their struggles.
I love that, thank you forsharing.
Speaker 3 (02:26):
Do you think that your diagnoses inspired you to
pursue the career that youpursued?
Speaker 2 (02:33):
Interestingly not necessarily In my undergraduate
career I actually studiedadvertising.
When I finished I was workingat a retirement home.
While I was working there,covid hit so we went into
lockdown.
I was doing event planningadvertising when we went into
lockdown, the residents were intheir rooms, couldn't see family
, we couldn't hold events, theywere just isolated.
(02:54):
I called my boss and was likelisten, I really want to be able
to do something for them.
Can I call and touch base withthem?
And she was like absolutely, gofor it.
I often heard a few themesanxiety, depression,
(03:25):
no-transcript, not trying toapply counseling.
I hadn't been a counselor yet,but just like being okay, let's
explain some of these copingskills and how you can use them
when you feel this way.
So that's actually whatinspired me to get into
counseling was once I was laidoff from this job because,
unfortunately, I had a positivelayer passed out, concussed,
didn't have enough FMLA to beable to do the PT and OT.
(03:47):
I was like you know what?
This was almost a blessing indisguise and I was able to go to
grad school and start workingin this field.
Speaker 3 (03:52):
I love that.
So you presented some researchon the intersections between
mental health and invisibledisabilities.
What were your key takeaways?
What did you learn?
Speaker 2 (04:01):
Yeah, there's some really interesting takeaways
that we can look at.
Those with a disability earneda median income in 2021 of
$28,438, compared to theirnon-disabled counterparts, who
made $40,948.
A huge disparity, right?
Research also shows that 88% ofemployees with a disability
(04:25):
chose not to disclose becausethey were afraid of the stigma
and discrimination that wouldcome along with it.
This then had repercussions,right?
So because of this, there wasfeelings of lower morale and
reduced productivity.
Some other statistics that weconsider are one in four adults
with disabilities 18 to 44, donot have a usual health care
provider.
One in four adults withdisabilities again, 18 to 44 do
(04:45):
not have usual health careprovider.
One in four adults withdisabilities again, 18 to 44
have unmet health care needs dueto costs in the past year.
So, again, just a lot ofobstacles.
While I'm not implying thatpeople with disabilities are not
just as capable as theirable-bodied counterparts,
there's definitely moreobstacles to overcome.
This can be both draining,physically and mentally.
Speaker 3 (05:12):
I agree.
I agree.
I didn't know that there was somuch of a difference in the
sliding pay scale.
I knew that there was adifference, I didn't realize
that it was so much of adifference.
And when you put the statisticsout there and, as people listen
to this guys, when you guys arelistening to this, understand
that if it's $28,000, they stillgot to pay co-pays for
medications and all of thethings.
When I tell you guys, everybodyis carrying something, that is
(05:32):
what I mean by that.
You may not see it.
People see me every day anddon't think that I look sick,
but it doesn't mean that I amnot carrying the stress of where
is the next co-pay coming from.
And that is a really real worryfor people that are chronically
ill and also invisibly ill.
Speaker 2 (05:49):
Yeah, as well as the barrier of having to prove that
you're disabled.
Right, yeah.
Speaker 1 (05:54):
Yep Now.
What challenges do individualswith invisible disabilities face
when it comes to mental health,and how can counselors or
allies provide support?
Speaker 2 (06:05):
Oftentimes, whether it's mental health or physical
health, we see that again, kindof what I just spoke on is the
need to prove that you have adisability.
Not all providers have equaleducation on this.
It's not necessarily somethingthat we're taught about in
schools.
So as mental health counselors,we are required to receive
continuing education to keep ourlicense.
(06:26):
So really finding someone thathas focused on how to support
those with disabilities andworks with them on building
resilience, finding copingskills you know has that
background to be able to helpthose, because when you're
having to prove that you have adisability or like you feel
someone's not meeting your needsor not hearing you, it makes it
(06:47):
a huge barrier to have toovercome.
Speaker 1 (06:49):
You are an advocate for Spoonies to prioritize both
their mental and their physicalhealth.
What kind of advice would yougive to someone who is just
beginning to advocate for theirown needs?
Speaker 2 (07:00):
When you're just beginning to advocate for your
own needs.
Definitely give yourself graceand patience.
There absolutely is a learningcurve and being able to find
your voice and advocate foryourself.
One of the biggest things Itell people is find your
community, even if it's online.
So, for instance, for POTS,there is a Facebook page, both
(07:21):
internationally and where I'mlocated in Pennsylvania.
A lot of times people will poston their providers that really
listened to them, heard themadvocate and helped meet their
needs.
Right?
So, looking for those providers, people on the flip side say,
hey, I went to this doctor andthey weren't willing to hear me.
They made me continue to provemyself.
Or, you know, I knew that thismedication works for me because
(07:41):
I had it for maybe anotherprovider that I had on a
different insurance.
But will you possibly provideit?
And sometimes providers say notreally our thing, I think
there's something better outthere for you, right?
So really knowing and lookingfor those communities that tell
you who has the experience, theknowledge and the empathy to be
able to provide that care foryou and also knowing that, if
you can't advocate for yourself,to look at those health
(08:06):
advocacy agencies as well.
Speaker 1 (08:07):
I love that.
That's a really good tip.
What role do you thinkstorytelling plays in building
resilience for individuals withchronic illnesses?
Speaker 2 (08:15):
Storytelling allows us to build acceptance, which in
turn leads to resilience, andit helps us create meaning from
our experiences.
Once a sense of meaning isbuilt, it helps us provide hope
and perspective rather thanfeeling defeated or overwhelmed.
It also helps us express ouremotions more regularly.
Once we can express ouremotions and identify what our
(08:36):
emotions are, we can reallyapply specific coping skills to
those emotions, so we can lookat adversity faced as something
that can be managed with theright tools to in turn reducing
feelings of hopelessness andfostering a mindset of agency
and control.
Speaker 1 (08:50):
Recently, the my Spoonie Sisters got together and
we decided to have aconversation about elevator
pitches.
Do you have an elevator pitchprepared for when you're in a
situation that you're beingasked about your, your chronic
illness, your invisibledisability, and what does that
look like for?
Speaker 2 (09:08):
you Just to clarify, like, are you saying sorry cause
this might not be useful?
Are you asking like what I sayabout my own journey, or like
what it was?
Speaker 1 (09:16):
Or if I were to come up to you in an elevator or
anywhere really, and approachyou and ask you about your
illness.
Um, or maybe my phrases, Andy,help me out.
Speaker 3 (09:30):
So it is your real quick read because you don't
keep explaining it.
So for me, I just ripped thebandaid off.
Hey, I'm Andy, I'm blind, I'mdeaf.
One time I met Jesus.
I had a whole cardiac arrest.
I died for 38 minutes.
I have a slew of autoimmunediseases.
Here's the one that's botheringme today.
So if you were to meet a newdoctor and they had never seen
(09:51):
your chart, your first fiveminutes with them when they go,
hey, tell me about you.
That's your elevator pitch.
Do you introduce some darkhumor?
Do you make it fun for yourself, because you have to keep
telling your story.
Speaker 2 (10:04):
Thank you, I really appreciate the perspective.
So the way I approach myelevator pitch is I want to
advocate for myself.
So you, as a doctor, need tounderstand that pause affects
every part of your body.
So every day, I am facing anuphill battle of making exact
choices on what can my spoons beused for like kind of bringing
(10:25):
us back to the spoonie thing,right?
So I'm making these choices.
I need you to know that I'veexperienced this for 14 years.
I know what works for me andwhat doesn't work for me, and
here's what I can tell you worksfor me.
And please listen and pleaseaccept that I have done my own
research and while you are anexpert as well, let's
collaborate together.
Speaker 3 (10:44):
Yes, I love it.
I love it.
You go in, no nonsense, rightout the gate.
Speaker 2 (10:49):
Absolutely no nonsense.
I really, even as a counselor,I'm a very strength-based,
solution-focused counselor.
So what that means is I look atwhat are the client's strengths
and how can we use their paststrengths and experiences to
come up with a solution thatworks the best for them, and I
really apply that to myself aswell.
Speaker 3 (11:05):
How do you approach helping couples and families
understand and support someonethat is dealing with invisible
disabilities or chronic illness?
Speaker 2 (11:13):
I think that's such a great question because a lot of
people don't know how tosupport someone.
They think they do andoftentimes what I'm seeing is
that couples, families, they'lldo all this research, which is
wonderful.
I really appreciate that theywant to support someone and they
do their research.
I think that's a good firststep, but make sure you're
incorporating the person who isdealing with this chronic
illness or this disability intothe conversation.
(11:35):
They're the ones living with it.
They're the ones thatunderstand what they need.
So bring them into theconversation and ask them like
how would you like to be helped?
How can I hear you see youvalidate your experience, right?
So, for instance, they'resaying, when I go to the doctors
, I have a really hard timeremembering all the details of
how I got here and what I need,and that's my biggest struggle
(11:57):
right now.
And let's say they did theirresearch, like this family
member, and said, okay, I'velearned that sometimes
caretakers can come toappointments and be a really
great advocate for what you need.
Based on that research and whatI'm hearing you say you need,
can I be that person for you?
So really, that collaborativeapproach of I'm taking you as a
person, you knowing what youneed, based on some of the stuff
I've read, applying it to howyou're asking me to use it.
(12:18):
That's so good, yeah, and Ithink, like I said, it's really
it has to be so person centeredand client centered.
I wish sometimes that doctorstook that approach and I wish
sometimes the doctors took thatapproach.
I think, as counselors, it'sour job to take that approach
with our clients, to help themadvocate and learn that they
have to bring their voice to thetable.
Speaker 3 (12:35):
With POTS awareness growing now you're starting to
see more commercials about it,so it's not all in our heads.
But with the awareness growing,as a person who lives with POTS
, what do you wish people knewmore about?
What do you think you wish theyunderstood?
Speaker 2 (12:52):
I wish that they understood how much it affects
every part of your body.
It's not just the tachycardia,it's not just the neurological
effects.
It can affect your bowels, itcan affect just so many
different things.
And people don't see that on aday-to-day basis.
So oftentimes I feel like theonly time people see my symptoms
are when I'm having a flare-uptoday basis.
So oftentimes I feel like theonly time people see my symptoms
are when I'm having a flare up.
(13:12):
I'm stuck in bed, I'm strugglingto even like raise water to my
mouth, right Like that's whenit's seen.
But know that every choice Imake throughout the day, every
spoon I'm using, is calculated.
That can be both mentally andphysically draining.
There are some days where Ican't meet the same expectations
that an able-bodied person mayhave for themselves.
So it's not that I'm lazy, it'snot that I don't want to do
(13:34):
things.
I'm working.
I might have needed to dolaundry that day, I might have
needed to wash dishes, and nowmy energy is starting to be
depleted.
I might look fine, I may seemfine, but I have to think about
how the rest of my day looks.
And if I'm meeting clients'needs, I also need to meet my
needs as well.
Speaker 1 (13:51):
How has connecting with the Spoonie community
supported you in your journeyand how do you aim to give back
to that community?
Speaker 2 (13:58):
I think, in connecting with the Spoonie
community, it's really beenimportant that I continue to
look at research, further myeducation, to know how I can
best support them and meet theirneeds.
It can be something likecontinuing to speak on podcasts,
presenting at conferences,going to events and speaking on
whether it's my journey or thethings I've seen in clients,
(14:20):
things I've read in research.
It can also be like somethingquick, little shout out there's
a POTS race or a race to be,pots 5k in Westchester on June
1st, so it could be somethinglike giving back by attending a
fundraiser.
So looking out for differentthings that you can do to
financially help to spread theword.
The voice is already out there.
(14:41):
There's so many people that aretrying to bolster the voice for
those with disabilities,invisible, invisible and I
really just want to be part ofbolstering it and lifting it up
and continuing to spread themessage.
Speaker 3 (14:51):
What would you say has been your most rewarding
moment of your counseling careerso far?
Speaker 2 (14:56):
It's hard to choose one moment that was the most
rewarding for my counselingcareer because there's so many
different wins that clients have, so to pick one is really
challenging, I think, because Italked about being a
strengths-based,solution-focused counselor.
No-transcript talk throughthings week to week like
(15:41):
watching them grow in that wayis incredible.
But I've seen so many clientswho struggle with tough mental
health situations work so hardon applying coping skills and
you see that week to weekprogression and I think that's
rewarding within itself.
You know whether it's anabusive situation or you're
dealing with crippling anxietyor crippling depression, and
watching people fight forthemselves, find their voice,
(16:03):
use their own strength.
It's something so rewarding tobe a part of and to see that
journey really go from start tofinish.
Speaker 3 (16:10):
So I'm the rogue one.
I always go rogue with thequestions, Potsy to Potsy.
I have a question what is yourtop five?
This is in my Pots managementtoolkit.
Speaker 2 (16:21):
I would say self-care number one, trying to find low
impact things or low impactenergy with high reward, right.
So what can I do that won'ttake away too many spoons but
gives me time to recharge?
I would say that's number one.
Hydrating incredibly important.
I try to get like 1.5 litersminimum of water a day.
(16:44):
Let's say mental health caresuper important, you know, going
to your own therapy to processsome of the stuff that you've
dealt with or dealing with,because anxiety for POTS, just
many other chronic illnesses anddisabilities, can be a trigger
for flare-ups.
So working through my ownmental health is really
important.
I also think balancingadvocating for others and
advocating for myself.
(17:05):
I think there's that balancethat needs to be done, where I'm
meeting clients' needs but alsomeeting my own needs and,
lastly, just having patience andgrace with myself, because this
journey is not necessarilyalways an easy one, and meeting
myself with some self-compassionalong the way.
Speaker 1 (17:23):
Looking ahead, what are your goals for spreading
awareness and creating a lastingimpact in the mental health and
chronic illness communities?
Speaker 2 (17:30):
Continuing to be able to speak out and spread as much
knowledge as possible.
So, like something I say today,I would love for it to reach
someone that was like you knowwhat?
I never thought about it fromthat perspective before.
So, continuing to speak atevents, conferences, podcasts,
being able to get the messageout anywhere and everywhere,
along with these other greatvoices, bolstering their voices,
(17:51):
bolstering this message, Iwould say, is my long-term goal,
but in the meantime, justtrying to take it day by day
help clients, meet them wherethey're at and providing them
with that lasting change andthose skills that they can use
for the rest of their life.
Speaker 1 (18:06):
Okay, I have some random questions, but, andy, did
you have something first?
Well, now, I was about to startasking the random questions.
Ooh.
Speaker 3 (18:12):
Okay, you want to go first.
Yes, on a flare day or go-toself-care exercise, or your
go-to self-care activity.
And what snack are we eating?
Speaker 2 (18:23):
With pods.
Eating something salty alwayshelps with trying to stay
hydrated.
I would say pretzels are mygo-to snack, like nice salty
pretzels or nice salty chips arealways great.
And then my go-to self-careactivity is laying in bed with
my feet up, so being able to getthe blood flow returning,
(18:43):
really taking time to rest andrecover, listening to a good
audiobook I could listen toHarry Potter on repeat for years
on end and never get bored soreally just taking care of
myself in the way that I need toand, like I said, allowing
myself that grace and patienceto just take the day to do that.
Speaker 1 (19:00):
Who is your favorite character in the Harry Potter
series?
Speaker 2 (19:04):
I personally love Hermione Granger.
I think that she is soknowledgeable and always tries
to use her knowledge to helpothers.
That really speaks to mepersonally.
I love to be like her.
I love school.
Like grad school is something Imiss dearly, I think really
just her, because I think shehas so many great attributes.
I think she's compassionate, Ithink she's a good friend
(19:25):
wanting to help others throughher own knowledge, and I think
that's why I love her the most.
Speaker 1 (19:29):
Now we all have those tasks that we absolutely detest
or put off.
So what is one task that youalways avoid?
Speaker 2 (19:38):
if you can't.
If I could avoid it foreverlaundry.
But laundry has to get doneright.
So I find that laundry isdraining for me for whatever
reason.
I don't know if it's like thephysical task of picking it up
and then like putting it awayand then folding it, because
with pots like that, up downmotion, so if I don't put it in
my laundry basket immediately,it's on the floor.
Speaker 3 (19:56):
I could test it.
Speaker 2 (19:56):
That's so real, that's so real rubbing the
shower is another thing.
Again that up down motion.
I actually do avoid the one.
My boyfriend's amazing, he willdo it.
Anything I can allocate tosomeone else and say this is a
struggle, this is going to causea flare-up for me and I
actually do need to avoid it.
Can you do this for me?
That's a really good one I.
Speaker 1 (20:15):
I avoid up down motions too, and I've never been
diagnosed with pots, but forsome reason the updown motions
always make me lightheaded, andif I can avoid it at all costs,
I'm going to avoid it.
I hate dusting.
Yeah, what about you, andy?
What's your one thing youabsolutely hate?
Speaker 3 (20:32):
So my thing is laundry.
But I'm very specific, right,I'm very particular.
I can wash clothes all dayright.
The sorting is therapeutic forme because, you know, I don't
like my food to touch, and sothe sorting of stuff is
therapeutic for me.
Where it becomes the struggle iswhen it's time to fold the
clothes, because my mind is likethese clothes aren't warm
(20:53):
anymore and now they're going towrinkle, and then I spiral, so
they go right back into thedryer because they have to be
the perfect temperature for meto not have to use any more
spoons when I want to getdressed.
So now, if I think in thetomorrow, if I wanted to wear
this, am I then going to have totake it out and iron it?
And then it just goes downhillfrom there and I start counting
my spoons from there, or I justput it back in the dryer and
(21:16):
then I force myself to fold it.
Or ask my daughter you know,hey, can you fold this for me
while it's still warm?
But the team activities in thishousehold it's.
I don't mind doing dishes, butunderstand that if I have to now
put them away and I'm up down,I'm probably going to end up on
the floor where it's going towipe me out for the rest of the
day.
The going I love groceryshopping but I like to avoid
(21:37):
grocery shopping when there's alot of people, because the
constant spinning and the peoplegoing past me really fast with
carts messes with me, messeswith my pots it's all kinds of
weird stuff, I think, but it'sdefinitely the folding of the
clothes.
I will put that off and put itoff.
And put it off until someoneelse says I'll fold them for you
.
Speaker 2 (21:54):
Now is it okay if I ask both of you a question, Of
course.
How are you both with yourpositive self-talk when there's
a task you can't do?
Speaker 3 (22:01):
So for me, I acknowledge what it is Is the
can't that I physically cannotdo it, or is the can't that I
need to actually approach itfrom a different perspective?
And that has been my life andmy chronic illness journey is
that my can't, your can't, isnot going to be my can't and
your you can't do it or youdon't do that or not is not
going to be my I am, and so Ilook at it from.
(22:24):
For me, is it that I physicallyam unable to do it Because I've
been physically unable to do alot of things and I'll be okay
with that, or did my mind justtell me I can't do it that way,
so I can't do it?
Can I approach it from adifferent angle?
What I've learned in my journeyis that a lot of the things
I've had to relearn to do, butlearned in my journeys that a
lot of the things I've had torelearn to do, but I still get
to do the things that I enjoy.
I had to learn how to do themdifferently.
(22:45):
I coach volleyball up and downmotions.
I can't get out there and playwith you often and I can't be
jumping off of things.
However, I can still stay withthe sport and I can teach you
all of the things, but it was aneducation moment for my young
athletes.
They've started to feel thosethings and they got to see
somebody that was going throughit and it helped them along
(23:05):
their diagnosis.
So it was helping with theadvocacy and it was building
community and awareness.
But it taught me that my can't.
A lot of the times I put mycan't on me because I was afraid
that I wouldn't be able to doit another way, because I
couldn't do it the way I used tobe able to do it.
How about you, jenny?
Speaker 1 (23:22):
I think it depends on where I'm at that day.
There are times that I cave inand I give into the can't, which
I try to fight all the time.
I'm really good at fighting itfor other people, but sometimes
for myself it's not so easy.
I think, when it comes to mychronic illnesses, that I'm a
little better at it because forsome reason I can push myself to
(23:45):
try harder on a flare day formy psoriasis or for my joints.
But if I'm having an anxietyday, those are the ones that are
the most difficult for me,because I can let anxiety run my
entire day.
If I'm having a panic attack,you might as well just check me
out.
My day's gone.
It's hard to come back frombecause once that goes into the
(24:07):
full blown arena it's so hard tobring your body back down, and
so the positive self-talksometimes is not there.
But I reach out to someone.
I reach out to one of myspoonie sisters.
There's been times I've reachedout to Andy or a couple of the
others that I'm close to and I'mlike, hey, talk me down here.
I'm struggling with X, Y and Z,and so I think that's one thing
(24:29):
that's really important toremember is community is
everything.
If you are having a tough day,it's okay to reach out to
someone and say help me, help meout here, because my positive
self-talk is just not theretoday.
I can do it for you, but it'snot here for myself.
Speaker 2 (24:44):
It's so interesting that you hit on that, because
one of the coping skills I teachclients when they're struggling
with positive self-talk is totalk to themselves like they
would talk to a loved one orfriend, right?
So if you aren't able in thatmoment to connect with someone
and you think about thesituation and you say to
yourself, like okay, I'mstruggling with X, y, z, would I
talk to my?
Would I talk to a friend asnegatively as I'm talking to
(25:08):
myself?
Like maybe it's like you shouldbe ashamed that you can't do
this in that moment?
No, we wouldn't say that to afriend or a loved one, right?
So why is it okay to speak toourselves that way and really
challenging those thoughts forourselves?
Speaker 1 (25:20):
That's an absolutely good point, because I think we
all fall down that rabbit holeat some point and we think we
have to have it all together andall the answers, do all the
things.
But that's not always easy todo and we do talk so terribly to
ourselves.
I'm the first to admit it.
There's times where I'm likegosh, dang it, jenny, why aren't
you pulling it together today?
What the heck is wrong with you?
(25:41):
Like, let it go, get over it,get up, do the thing.
That's not okay.
I'd never say that to anyone.
Speaker 2 (25:48):
I think the more we get into the habit of talking to
ourselves positively andchallenging those thoughts, the
easier it becomes over time.
It's like building any habitright.
Like even if we were going tothe gym, like we don't pick up
the hundred pound weight, andthat's our starting point we
pick up the five-pound weightand then eventually, the more we
lift that weight, the easier itbecomes to lift it right.
So just like that, that appliesto mental health and coping
(26:09):
skills as well, I agree, I agree.
Speaker 3 (26:11):
I think that was one of the biggest things, the
greatest gifts I gave myself wasto allow myself the permission,
from my perspective, to changefrom victim to victorious.
I understand that life ishappening to me, but I was
playing the victim in my ownstory.
I understand that I'm going tohave really bad days.
(26:32):
What it helped me see, though,was the people around me, my
community, and whether or not itwas truly a community, and I
realized that, a lot of thetimes where I was flaring, the
things that were causing myflare was a part of the things
that I kept around me because Ididn't want to feel isolated.
It is very empowering to sit ina space where you go.
I want to feel better, and inorder for me to feel better, my
(26:52):
mindset has to change, and that,when my mindset changes,
there's a possibility that I'mgoing to lose some people, and
that's okay too, but I just wantto feel better.
So the low lightens when youtake the minute to prioritize
yourself, and, as conditioned asthe world may be to believe
that the priority of you beingselfish, it's not, because,
(27:16):
without you in the equation, ifyou're the person that people
needed things from.
Eventually, you are pouringdust.
You're pouring dust and it'shelping perpetuate your flare.
If you're chronically ill, itjust it has been a growing
experience, this 20 plus yearsof living with something that
people can't see.
It does force compassion, itdoes force a lot of empathy.
(27:39):
You do pause a lot more andyou're way less quick to judge,
and so I meet people everysingle day and it's extremely
encouraging.
How are you doing?
I want to know that you're okay.
I'm going to stop and I'm goingto talk to you and I'm going to
make the eye contact.
I learned a lot about.
I became an expert at being aneffective communicator because
(28:03):
my health mattered, and when Ibecame an expert at effectively
communicating with me, for me,my needs, I was able to
effectively communicate withothers in a way that they can
receive it and be able to showup for me in a way that I needed
, where it didn't feelstandoffish or pressure or do it
this way.
So it's worth the lookinginward.
(28:25):
Sometimes it's not alwayspretty, but it's worth it.
Speaker 2 (28:28):
And I think it's kind of what you're some of.
The thing that I hear you'regetting to at the core is like
that air mask analogy right Likeyou have to put your own air
mask on before you can helpothers Absolutely, absolutely.
Speaker 3 (28:38):
Remove the mask of fine.
Be something other than fine.
Identify what fine actuallylooks like for you Is fine?
Overwhelmed Is fine, stressedout Is fine.
Tired Is fine.
I feel like crap, becausethat's not actually fine.
It's the opposite of thedictionary definition of what
fine means, but we use it as aplacekeeper.
I'm fine, how you doing?
(28:58):
Good Are you, though?
Are you fine, are you good, areyou okay?
Because if you're not, that'sokay too, and there's
communities of people that willjust hold your hand when you're
not okay, and there's help outthere.
But I think a lot of the time,especially early diagnosed, we
try to do this alone.
We already feel isolated,people already don't get it.
(29:19):
So we shut't need to happen,guys, and I think a lot of the
people that came before you wentthrough it to be on this side
of it, to go, hey, the shutdowndoesn't have to happen, but when
it does, if it does, I've beenthere too, and we don't have to
talk.
We could just sit, because Iget it.
I've been there too.
Sometimes you just don't havethe words.
We don't always want you to fixit, we just want to be heard.
Speaker 1 (29:46):
Absolutely Well.
Speaker 2 (29:46):
Maggie, thank you for your time.
Do you have any last bit ofwords or encouragement you want
to leave listeners with today?
I would say, if I had any lastwords or encouragement,
recognize that this is a journey, right, we all have a starting
point and you know it's going totake time.
There's going to be uphills anddownhills and we're going to
see paths and we're not surewhich way to cross.
But continue to meet withyourself and give yourself
(30:07):
compassion, empathy and grace,and that will make this journey
a lot easier, especially if wecan walk this journey with
others who understand it.
Thank you so much for your time.
Thank you so much for having me.
Speaker 3 (30:18):
It was a pleasure to get to know you.
Maggie, it was a pleasure toget to know you.
Speaker 2 (30:23):
Thank you for spending some time with us.
Thank you, and you're both soinsightful and I know that you
provide so much for the Spooniecommunity, so to be able to be a
part of this was a really greatexperience.
I want to say thank you to bothof you, of course.
Speaker 3 (30:34):
Absolutely.
Speaker 1 (30:37):
All right, my Spoonies out there.
Until next time, don't forgetyour spoon.
Welcome back to my Spoonie Sisters Podcast.
Welcome Maggie Cavanaugh, aNational Certified Counselor
with a passion for helpingindividuals navigate the
complexities of mental healthand invisible disabilities.
Since beginning her work in themental health field in 2022,
maggie has worked in school andprivate practice settings,
(00:21):
counseling individuals, couplesand families through life
transitions, trauma and beyond.
Since 2012, she has been livingwith postural orthostatic
tachycardia syndrome Most of usknow it as POTS, an invisible
disability that informs andfuels her commitment to helping
others in the chronic illnesscommunity find resilience and
(00:43):
advocacy in their own journeys.
Today we're going to exploreMaggie's story, her insights and
advice for spoonies who arenavigating the intersections of
mental health and chronicillness.
We are joined with the one andonly Andy Byers co-host today.
Thank you both for being here.
Maggie, how are you today?
Speaker 2 (01:02):
I'm doing well.
How are you?
I am well.
Speaker 1 (01:03):
Andy, how are you today?
I'm doing well.
How are you?
I am well.
Andy, how are you today?
Speaker 3 (01:06):
Fabulous, I am happy to have a pot yawn, so I have a
new bestie and we could talk allabout it.
Speaker 1 (01:11):
I know I was excited and I can't wait to listen to
everything you both have toshare.
Speaker 3 (01:16):
Maggie, can you share a little bit about your journey
with pots?
How has living with it been foryou?
How has it shaped yourperspective?
Speaker 2 (01:23):
Yes, I was diagnosed when I was 14, which I believe
is about the average age forsomeone to be diagnosed with
POTS.
So it started off one day withme randomly passing out and
going to the doctors to see whatoccurred.
It took about four months toget a diagnosis.
There was a lot of misdiagnoses.
A lot of it's just mentalhealth, it's just your anxiety.
(01:45):
But I have an incredible mom whois a nurse who was like I don't
think what she's being told iscorrect.
So she did a lot of research onthe symptoms I was having and
found a pot specialist out atJohns Hopkins and reached out to
this doctor and talked to himabout what I was experiencing.
She brought it back to thecardiologist and neurologist
that I was seeing by me in thePhiladelphia area.
(02:06):
We finally got a diagnosis ofCOTS.
I think professionally andpersonally it's definitely
affected me and I think at thecore it's just given me a lot
more empathy.
I look at life through a lensof wanting to walk the journey
with people through empathyrather than against them through
their struggles.
I love that, thank you forsharing.
Speaker 3 (02:26):
Do you think that your diagnoses inspired you to
pursue the career that youpursued?
Speaker 2 (02:33):
Interestingly not necessarily In my undergraduate
career I actually studiedadvertising.
When I finished I was workingat a retirement home.
While I was working there,covid hit so we went into
lockdown.
I was doing event planningadvertising when we went into
lockdown, the residents were intheir rooms, couldn't see family
, we couldn't hold events, theywere just isolated.
(02:54):
I called my boss and was likelisten, I really want to be able
to do something for them.
Can I call and touch base withthem?
And she was like absolutely, gofor it.
I often heard a few themesanxiety, depression,
(03:25):
no-transcript, not trying toapply counseling.
I hadn't been a counselor yet,but just like being okay, let's
explain some of these copingskills and how you can use them
when you feel this way.
So that's actually whatinspired me to get into
counseling was once I was laidoff from this job because,
unfortunately, I had a positivelayer passed out, concussed,
didn't have enough FMLA to beable to do the PT and OT.
(03:47):
I was like you know what?
This was almost a blessing indisguise and I was able to go to
grad school and start workingin this field.
Speaker 3 (03:52):
I love that.
So you presented some researchon the intersections between
mental health and invisibledisabilities.
What were your key takeaways?
What did you learn?
Speaker 2 (04:01):
Yeah, there's some really interesting takeaways
that we can look at.
Those with a disability earneda median income in 2021 of
$28,438, compared to theirnon-disabled counterparts, who
made $40,948.
A huge disparity, right?
Research also shows that 88% ofemployees with a disability
(04:25):
chose not to disclose becausethey were afraid of the stigma
and discrimination that wouldcome along with it.
This then had repercussions,right?
So because of this, there wasfeelings of lower morale and
reduced productivity.
Some other statistics that weconsider are one in four adults
with disabilities 18 to 44, donot have a usual health care
provider.
One in four adults withdisabilities again, 18 to 44 do
(04:45):
not have usual health careprovider.
One in four adults withdisabilities again, 18 to 44
have unmet health care needs dueto costs in the past year.
So, again, just a lot ofobstacles.
While I'm not implying thatpeople with disabilities are not
just as capable as theirable-bodied counterparts,
there's definitely moreobstacles to overcome.
This can be both draining,physically and mentally.
Speaker 3 (05:12):
I agree.
I agree.
I didn't know that there was somuch of a difference in the
sliding pay scale.
I knew that there was adifference, I didn't realize
that it was so much of adifference.
And when you put the statisticsout there and, as people listen
to this guys, when you guys arelistening to this, understand
that if it's $28,000, they stillgot to pay co-pays for
medications and all of thethings.
When I tell you guys, everybodyis carrying something, that is
(05:32):
what I mean by that.
You may not see it.
People see me every day anddon't think that I look sick,
but it doesn't mean that I amnot carrying the stress of where
is the next co-pay coming from.
And that is a really real worryfor people that are chronically
ill and also invisibly ill.
Speaker 2 (05:49):
Yeah, as well as the barrier of having to prove that
you're disabled.
Right, yeah.
Speaker 1 (05:54):
Yep Now.
What challenges do individualswith invisible disabilities face
when it comes to mental health,and how can counselors or
allies provide support?
Speaker 2 (06:05):
Oftentimes, whether it's mental health or physical
health, we see that again, kindof what I just spoke on is the
need to prove that you have adisability.
Not all providers have equaleducation on this.
It's not necessarily somethingthat we're taught about in
schools.
So as mental health counselors,we are required to receive
continuing education to keep ourlicense.
(06:26):
So really finding someone thathas focused on how to support
those with disabilities andworks with them on building
resilience, finding copingskills you know has that
background to be able to helpthose, because when you're
having to prove that you have adisability or like you feel
someone's not meeting your needsor not hearing you, it makes it
(06:47):
a huge barrier to have toovercome.
Speaker 1 (06:49):
You are an advocate for Spoonies to prioritize both
their mental and their physicalhealth.
What kind of advice would yougive to someone who is just
beginning to advocate for theirown needs?
Speaker 2 (07:00):
When you're just beginning to advocate for your
own needs.
Definitely give yourself graceand patience.
There absolutely is a learningcurve and being able to find
your voice and advocate foryourself.
One of the biggest things Itell people is find your
community, even if it's online.
So, for instance, for POTS,there is a Facebook page, both
(07:21):
internationally and where I'mlocated in Pennsylvania.
A lot of times people will poston their providers that really
listened to them, heard themadvocate and helped meet their
needs.
Right?
So, looking for those providers, people on the flip side say,
hey, I went to this doctor andthey weren't willing to hear me.
They made me continue to provemyself.
Or, you know, I knew that thismedication works for me because
(07:41):
I had it for maybe anotherprovider that I had on a
different insurance.
But will you possibly provideit?
And sometimes providers say notreally our thing, I think
there's something better outthere for you, right?
So really knowing and lookingfor those communities that tell
you who has the experience, theknowledge and the empathy to be
able to provide that care foryou and also knowing that, if
you can't advocate for yourself,to look at those health
(08:06):
advocacy agencies as well.
Speaker 1 (08:07):
I love that.
That's a really good tip.
What role do you thinkstorytelling plays in building
resilience for individuals withchronic illnesses?
Speaker 2 (08:15):
Storytelling allows us to build acceptance, which in
turn leads to resilience, andit helps us create meaning from
our experiences.
Once a sense of meaning isbuilt, it helps us provide hope
and perspective rather thanfeeling defeated or overwhelmed.
It also helps us express ouremotions more regularly.
Once we can express ouremotions and identify what our
(08:36):
emotions are, we can reallyapply specific coping skills to
those emotions, so we can lookat adversity faced as something
that can be managed with theright tools to in turn reducing
feelings of hopelessness andfostering a mindset of agency
and control.
Speaker 1 (08:50):
Recently, the my Spoonie Sisters got together and
we decided to have aconversation about elevator
pitches.
Do you have an elevator pitchprepared for when you're in a
situation that you're beingasked about your, your chronic
illness, your invisibledisability, and what does that
look like for?
Speaker 2 (09:08):
you Just to clarify, like, are you saying sorry cause
this might not be useful?
Are you asking like what I sayabout my own journey, or like
what it was?
Speaker 1 (09:16):
Or if I were to come up to you in an elevator or
anywhere really, and approachyou and ask you about your
illness.
Um, or maybe my phrases, Andy,help me out.
Speaker 3 (09:30):
So it is your real quick read because you don't
keep explaining it.
So for me, I just ripped thebandaid off.
Hey, I'm Andy, I'm blind, I'mdeaf.
One time I met Jesus.
I had a whole cardiac arrest.
I died for 38 minutes.
I have a slew of autoimmunediseases.
Here's the one that's botheringme today.
So if you were to meet a newdoctor and they had never seen
(09:51):
your chart, your first fiveminutes with them when they go,
hey, tell me about you.
That's your elevator pitch.
Do you introduce some darkhumor?
Do you make it fun for yourself, because you have to keep
telling your story.
Speaker 2 (10:04):
Thank you, I really appreciate the perspective.
So the way I approach myelevator pitch is I want to
advocate for myself.
So you, as a doctor, need tounderstand that pause affects
every part of your body.
So every day, I am facing anuphill battle of making exact
choices on what can my spoons beused for like kind of bringing
(10:25):
us back to the spoonie thing,right?
So I'm making these choices.
I need you to know that I'veexperienced this for 14 years.
I know what works for me andwhat doesn't work for me, and
here's what I can tell you worksfor me.
And please listen and pleaseaccept that I have done my own
research and while you are anexpert as well, let's
collaborate together.
Speaker 3 (10:44):
Yes, I love it.
I love it.
You go in, no nonsense, rightout the gate.
Speaker 2 (10:49):
Absolutely no nonsense.
I really, even as a counselor,I'm a very strength-based,
solution-focused counselor.
So what that means is I look atwhat are the client's strengths
and how can we use their paststrengths and experiences to
come up with a solution thatworks the best for them, and I
really apply that to myself aswell.
Speaker 3 (11:05):
How do you approach helping couples and families
understand and support someonethat is dealing with invisible
disabilities or chronic illness?
Speaker 2 (11:13):
I think that's such a great question because a lot of
people don't know how tosupport someone.
They think they do andoftentimes what I'm seeing is
that couples, families, they'lldo all this research, which is
wonderful.
I really appreciate that theywant to support someone and they
do their research.
I think that's a good firststep, but make sure you're
incorporating the person who isdealing with this chronic
illness or this disability intothe conversation.
(11:35):
They're the ones living with it.
They're the ones thatunderstand what they need.
So bring them into theconversation and ask them like
how would you like to be helped?
How can I hear you see youvalidate your experience, right?
So, for instance, they'resaying, when I go to the doctors
, I have a really hard timeremembering all the details of
how I got here and what I need,and that's my biggest struggle
(11:57):
right now.
And let's say they did theirresearch, like this family
member, and said, okay, I'velearned that sometimes
caretakers can come toappointments and be a really
great advocate for what you need.
Based on that research and whatI'm hearing you say you need,
can I be that person for you?
So really, that collaborativeapproach of I'm taking you as a
person, you knowing what youneed, based on some of the stuff
I've read, applying it to howyou're asking me to use it.
(12:18):
That's so good, yeah, and Ithink, like I said, it's really
it has to be so person centeredand client centered.
I wish sometimes that doctorstook that approach and I wish
sometimes the doctors took thatapproach.
I think, as counselors, it'sour job to take that approach
with our clients, to help themadvocate and learn that they
have to bring their voice to thetable.
Speaker 3 (12:35):
With POTS awareness growing now you're starting to
see more commercials about it,so it's not all in our heads.
But with the awareness growing,as a person who lives with POTS
, what do you wish people knewmore about?
What do you think you wish theyunderstood?
Speaker 2 (12:52):
I wish that they understood how much it affects
every part of your body.
It's not just the tachycardia,it's not just the neurological
effects.
It can affect your bowels, itcan affect just so many
different things.
And people don't see that on aday-to-day basis.
So oftentimes I feel like theonly time people see my symptoms
are when I'm having a flare-uptoday basis.
So oftentimes I feel like theonly time people see my symptoms
are when I'm having a flare up.
(13:12):
I'm stuck in bed, I'm strugglingto even like raise water to my
mouth, right Like that's whenit's seen.
But know that every choice Imake throughout the day, every
spoon I'm using, is calculated.
That can be both mentally andphysically draining.
There are some days where Ican't meet the same expectations
that an able-bodied person mayhave for themselves.
So it's not that I'm lazy, it'snot that I don't want to do
(13:34):
things.
I'm working.
I might have needed to dolaundry that day, I might have
needed to wash dishes, and nowmy energy is starting to be
depleted.
I might look fine, I may seemfine, but I have to think about
how the rest of my day looks.
And if I'm meeting clients'needs, I also need to meet my
needs as well.
Speaker 1 (13:51):
How has connecting with the Spoonie community
supported you in your journeyand how do you aim to give back
to that community?
Speaker 2 (13:58):
I think, in connecting with the Spoonie
community, it's really beenimportant that I continue to
look at research, further myeducation, to know how I can
best support them and meet theirneeds.
It can be something likecontinuing to speak on podcasts,
presenting at conferences,going to events and speaking on
whether it's my journey or thethings I've seen in clients,
(14:20):
things I've read in research.
It can also be like somethingquick, little shout out there's
a POTS race or a race to be,pots 5k in Westchester on June
1st, so it could be somethinglike giving back by attending a
fundraiser.
So looking out for differentthings that you can do to
financially help to spread theword.
The voice is already out there.
(14:41):
There's so many people that aretrying to bolster the voice for
those with disabilities,invisible, invisible and I
really just want to be part ofbolstering it and lifting it up
and continuing to spread themessage.
Speaker 3 (14:51):
What would you say has been your most rewarding
moment of your counseling careerso far?
Speaker 2 (14:56):
It's hard to choose one moment that was the most
rewarding for my counselingcareer because there's so many
different wins that clients have, so to pick one is really
challenging, I think, because Italked about being a
strengths-based,solution-focused counselor.
No-transcript talk throughthings week to week like
(15:41):
watching them grow in that wayis incredible.
But I've seen so many clientswho struggle with tough mental
health situations work so hardon applying coping skills and
you see that week to weekprogression and I think that's
rewarding within itself.
You know whether it's anabusive situation or you're
dealing with crippling anxietyor crippling depression, and
watching people fight forthemselves, find their voice,
(16:03):
use their own strength.
It's something so rewarding tobe a part of and to see that
journey really go from start tofinish.
Speaker 3 (16:10):
So I'm the rogue one.
I always go rogue with thequestions, Potsy to Potsy.
I have a question what is yourtop five?
This is in my Pots managementtoolkit.
Speaker 2 (16:21):
I would say self-care number one, trying to find low
impact things or low impactenergy with high reward, right.
So what can I do that won'ttake away too many spoons but
gives me time to recharge?
I would say that's number one.
Hydrating incredibly important.
I try to get like 1.5 litersminimum of water a day.
(16:44):
Let's say mental health caresuper important, you know, going
to your own therapy to processsome of the stuff that you've
dealt with or dealing with,because anxiety for POTS, just
many other chronic illnesses anddisabilities, can be a trigger
for flare-ups.
So working through my ownmental health is really
important.
I also think balancingadvocating for others and
advocating for myself.
(17:05):
I think there's that balancethat needs to be done, where I'm
meeting clients' needs but alsomeeting my own needs and,
lastly, just having patience andgrace with myself, because this
journey is not necessarilyalways an easy one, and meeting
myself with some self-compassionalong the way.
Speaker 1 (17:23):
Looking ahead, what are your goals for spreading
awareness and creating a lastingimpact in the mental health and
chronic illness communities?
Speaker 2 (17:30):
Continuing to be able to speak out and spread as much
knowledge as possible.
So, like something I say today,I would love for it to reach
someone that was like you knowwhat?
I never thought about it fromthat perspective before.
So, continuing to speak atevents, conferences, podcasts,
being able to get the messageout anywhere and everywhere,
along with these other greatvoices, bolstering their voices,
(17:51):
bolstering this message, Iwould say, is my long-term goal,
but in the meantime, justtrying to take it day by day
help clients, meet them wherethey're at and providing them
with that lasting change andthose skills that they can use
for the rest of their life.
Speaker 1 (18:06):
Okay, I have some random questions, but, andy, did
you have something first?
Well, now, I was about to startasking the random questions.
Ooh.
Speaker 3 (18:12):
Okay, you want to go first.
Yes, on a flare day or go-toself-care exercise, or your
go-to self-care activity.
And what snack are we eating?
Speaker 2 (18:23):
With pods.
Eating something salty alwayshelps with trying to stay
hydrated.
I would say pretzels are mygo-to snack, like nice salty
pretzels or nice salty chips arealways great.
And then my go-to self-careactivity is laying in bed with
my feet up, so being able to getthe blood flow returning,
(18:43):
really taking time to rest andrecover, listening to a good
audiobook I could listen toHarry Potter on repeat for years
on end and never get bored soreally just taking care of
myself in the way that I need toand, like I said, allowing
myself that grace and patienceto just take the day to do that.
Speaker 1 (19:00):
Who is your favorite character in the Harry Potter
series?
Speaker 2 (19:04):
I personally love Hermione Granger.
I think that she is soknowledgeable and always tries
to use her knowledge to helpothers.
That really speaks to mepersonally.
I love to be like her.
I love school.
Like grad school is something Imiss dearly, I think really
just her, because I think shehas so many great attributes.
I think she's compassionate, Ithink she's a good friend
(19:25):
wanting to help others throughher own knowledge, and I think
that's why I love her the most.
Speaker 1 (19:29):
Now we all have those tasks that we absolutely detest
or put off.
So what is one task that youalways avoid?
Speaker 2 (19:38):
if you can't.
If I could avoid it foreverlaundry.
But laundry has to get doneright.
So I find that laundry isdraining for me for whatever
reason.
I don't know if it's like thephysical task of picking it up
and then like putting it awayand then folding it, because
with pots like that, up downmotion, so if I don't put it in
my laundry basket immediately,it's on the floor.
Speaker 3 (19:56):
I could test it.
Speaker 2 (19:56):
That's so real, that's so real rubbing the
shower is another thing.
Again that up down motion.
I actually do avoid the one.
My boyfriend's amazing, he willdo it.
Anything I can allocate tosomeone else and say this is a
struggle, this is going to causea flare-up for me and I
actually do need to avoid it.
Can you do this for me?
That's a really good one I.
Speaker 1 (20:15):
I avoid up down motions too, and I've never been
diagnosed with pots, but forsome reason the updown motions
always make me lightheaded, andif I can avoid it at all costs,
I'm going to avoid it.
I hate dusting.
Yeah, what about you, andy?
What's your one thing youabsolutely hate?
Speaker 3 (20:32):
So my thing is laundry.
But I'm very specific, right,I'm very particular.
I can wash clothes all dayright.
The sorting is therapeutic forme because, you know, I don't
like my food to touch, and sothe sorting of stuff is
therapeutic for me.
Where it becomes the struggle iswhen it's time to fold the
clothes, because my mind is likethese clothes aren't warm
(20:53):
anymore and now they're going towrinkle, and then I spiral, so
they go right back into thedryer because they have to be
the perfect temperature for meto not have to use any more
spoons when I want to getdressed.
So now, if I think in thetomorrow, if I wanted to wear
this, am I then going to have totake it out and iron it?
And then it just goes downhillfrom there and I start counting
my spoons from there, or I justput it back in the dryer and
(21:16):
then I force myself to fold it.
Or ask my daughter you know,hey, can you fold this for me
while it's still warm?
But the team activities in thishousehold it's.
I don't mind doing dishes, butunderstand that if I have to now
put them away and I'm up down,I'm probably going to end up on
the floor where it's going towipe me out for the rest of the
day.
The going I love groceryshopping but I like to avoid
(21:37):
grocery shopping when there's alot of people, because the
constant spinning and the peoplegoing past me really fast with
carts messes with me, messeswith my pots it's all kinds of
weird stuff, I think, but it'sdefinitely the folding of the
clothes.
I will put that off and put itoff.
And put it off until someoneelse says I'll fold them for you
.
Speaker 2 (21:54):
Now is it okay if I ask both of you a question, Of
course.
How are you both with yourpositive self-talk when there's
a task you can't do?
Speaker 3 (22:01):
So for me, I acknowledge what it is Is the
can't that I physically cannotdo it, or is the can't that I
need to actually approach itfrom a different perspective?
And that has been my life andmy chronic illness journey is
that my can't, your can't, isnot going to be my can't and
your you can't do it or youdon't do that or not is not
going to be my I am, and so Ilook at it from.
(22:24):
For me, is it that I physicallyam unable to do it Because I've
been physically unable to do alot of things and I'll be okay
with that, or did my mind justtell me I can't do it that way,
so I can't do it?
Can I approach it from adifferent angle?
What I've learned in my journeyis that a lot of the things
I've had to relearn to do, butlearned in my journeys that a
lot of the things I've had torelearn to do, but I still get
to do the things that I enjoy.
I had to learn how to do themdifferently.
(22:45):
I coach volleyball up and downmotions.
I can't get out there and playwith you often and I can't be
jumping off of things.
However, I can still stay withthe sport and I can teach you
all of the things, but it was aneducation moment for my young
athletes.
They've started to feel thosethings and they got to see
somebody that was going throughit and it helped them along
(23:05):
their diagnosis.
So it was helping with theadvocacy and it was building
community and awareness.
But it taught me that my can't.
A lot of the times I put mycan't on me because I was afraid
that I wouldn't be able to doit another way, because I
couldn't do it the way I used tobe able to do it.
How about you, jenny?
Speaker 1 (23:22):
I think it depends on where I'm at that day.
There are times that I cave inand I give into the can't, which
I try to fight all the time.
I'm really good at fighting itfor other people, but sometimes
for myself it's not so easy.
I think, when it comes to mychronic illnesses, that I'm a
little better at it because forsome reason I can push myself to
(23:45):
try harder on a flare day formy psoriasis or for my joints.
But if I'm having an anxietyday, those are the ones that are
the most difficult for me,because I can let anxiety run my
entire day.
If I'm having a panic attack,you might as well just check me
out.
My day's gone.
It's hard to come back frombecause once that goes into the
(24:07):
full blown arena it's so hard tobring your body back down, and
so the positive self-talksometimes is not there.
But I reach out to someone.
I reach out to one of myspoonie sisters.
There's been times I've reachedout to Andy or a couple of the
others that I'm close to and I'mlike, hey, talk me down here.
I'm struggling with X, Y and Z,and so I think that's one thing
(24:29):
that's really important toremember is community is
everything.
If you are having a tough day,it's okay to reach out to
someone and say help me, help meout here, because my positive
self-talk is just not theretoday.
I can do it for you, but it'snot here for myself.
Speaker 2 (24:44):
It's so interesting that you hit on that, because
one of the coping skills I teachclients when they're struggling
with positive self-talk is totalk to themselves like they
would talk to a loved one orfriend, right?
So if you aren't able in thatmoment to connect with someone
and you think about thesituation and you say to
yourself, like okay, I'mstruggling with X, y, z, would I
talk to my?
Would I talk to a friend asnegatively as I'm talking to
(25:08):
myself?
Like maybe it's like you shouldbe ashamed that you can't do
this in that moment?
No, we wouldn't say that to afriend or a loved one, right?
So why is it okay to speak toourselves that way and really
challenging those thoughts forourselves?
Speaker 1 (25:20):
That's an absolutely good point, because I think we
all fall down that rabbit holeat some point and we think we
have to have it all together andall the answers, do all the
things.
But that's not always easy todo and we do talk so terribly to
ourselves.
I'm the first to admit it.
There's times where I'm likegosh, dang it, jenny, why aren't
you pulling it together today?
What the heck is wrong with you?
(25:41):
Like, let it go, get over it,get up, do the thing.
That's not okay.
I'd never say that to anyone.
Speaker 2 (25:48):
I think the more we get into the habit of talking to
ourselves positively andchallenging those thoughts, the
easier it becomes over time.
It's like building any habitright.
Like even if we were going tothe gym, like we don't pick up
the hundred pound weight, andthat's our starting point we
pick up the five-pound weightand then eventually, the more we
lift that weight, the easier itbecomes to lift it right.
So just like that, that appliesto mental health and coping
(26:09):
skills as well, I agree, I agree.
Speaker 3 (26:11):
I think that was one of the biggest things, the
greatest gifts I gave myself wasto allow myself the permission,
from my perspective, to changefrom victim to victorious.
I understand that life ishappening to me, but I was
playing the victim in my ownstory.
I understand that I'm going tohave really bad days.
(26:32):
What it helped me see, though,was the people around me, my
community, and whether or not itwas truly a community, and I
realized that, a lot of thetimes where I was flaring, the
things that were causing myflare was a part of the things
that I kept around me because Ididn't want to feel isolated.
It is very empowering to sit ina space where you go.
I want to feel better, and inorder for me to feel better, my
(26:52):
mindset has to change, and that,when my mindset changes,
there's a possibility that I'mgoing to lose some people, and
that's okay too, but I just wantto feel better.
So the low lightens when youtake the minute to prioritize
yourself, and, as conditioned asthe world may be to believe
that the priority of you beingselfish, it's not, because,
(27:16):
without you in the equation, ifyou're the person that people
needed things from.
Eventually, you are pouringdust.
You're pouring dust and it'shelping perpetuate your flare.
If you're chronically ill, itjust it has been a growing
experience, this 20 plus yearsof living with something that
people can't see.
It does force compassion, itdoes force a lot of empathy.
(27:39):
You do pause a lot more andyou're way less quick to judge,
and so I meet people everysingle day and it's extremely
encouraging.
How are you doing?
I want to know that you're okay.
I'm going to stop and I'm goingto talk to you and I'm going to
make the eye contact.
I learned a lot about.
I became an expert at being aneffective communicator because
(28:03):
my health mattered, and when Ibecame an expert at effectively
communicating with me, for me,my needs, I was able to
effectively communicate withothers in a way that they can
receive it and be able to showup for me in a way that I needed
, where it didn't feelstandoffish or pressure or do it
this way.
So it's worth the lookinginward.
(28:25):
Sometimes it's not alwayspretty, but it's worth it.
Speaker 2 (28:28):
And I think it's kind of what you're some of.
The thing that I hear you'regetting to at the core is like
that air mask analogy right Likeyou have to put your own air
mask on before you can helpothers Absolutely, absolutely.
Speaker 3 (28:38):
Remove the mask of fine.
Be something other than fine.
Identify what fine actuallylooks like for you Is fine?
Overwhelmed Is fine, stressedout Is fine.
Tired Is fine.
I feel like crap, becausethat's not actually fine.
It's the opposite of thedictionary definition of what
fine means, but we use it as aplacekeeper.
I'm fine, how you doing?
(28:58):
Good Are you, though?
Are you fine, are you good, areyou okay?
Because if you're not, that'sokay too, and there's
communities of people that willjust hold your hand when you're
not okay, and there's help outthere.
But I think a lot of the time,especially early diagnosed, we
try to do this alone.
We already feel isolated,people already don't get it.
(29:19):
So we shut't need to happen,guys, and I think a lot of the
people that came before you wentthrough it to be on this side
of it, to go, hey, the shutdowndoesn't have to happen, but when
it does, if it does, I've beenthere too, and we don't have to
talk.
We could just sit, because Iget it.
I've been there too.
Sometimes you just don't havethe words.
We don't always want you to fixit, we just want to be heard.
Speaker 1 (29:46):
Absolutely Well.
Speaker 2 (29:46):
Maggie, thank you for your time.
Do you have any last bit ofwords or encouragement you want
to leave listeners with today?
I would say, if I had any lastwords or encouragement,
recognize that this is a journey, right, we all have a starting
point and you know it's going totake time.
There's going to be uphills anddownhills and we're going to
see paths and we're not surewhich way to cross.
But continue to meet withyourself and give yourself
(30:07):
compassion, empathy and grace,and that will make this journey
a lot easier, especially if wecan walk this journey with
others who understand it.
Thank you so much for your time.
Thank you so much for having me.
Speaker 3 (30:18):
It was a pleasure to get to know you.
Maggie, it was a pleasure toget to know you.
Speaker 2 (30:23):
Thank you for spending some time with us.
Thank you, and you're both soinsightful and I know that you
provide so much for the Spooniecommunity, so to be able to be a
part of this was a really greatexperience.
I want to say thank you to bothof you, of course.
Speaker 3 (30:34):
Absolutely.
Speaker 1 (30:37):
All right, my Spoonies out there.
Until next time, don't forgetyour spoon.
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