The Sick Gaze

"Don't Give in to Your Illness": Shame and Blame Around Disability with Sarah Klotzbach

Molly Dickerson Season 1 Episode 3

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In this episode of The Sick Gaze, I sit down with Sarah Klotzbach, a young woman living in the South Carolina Lowcountry who is navigating life with hypermobile Ehlers-Danlos syndrome, Postural Orthostatic Tachycardia syndrome, and Mast Cell Activation disorder.  Sarah guides us through her day-to-day life, sharing her relatives' understanding of illness from a devout Christian background, gender roles when living with illness, what productivity means when you're sick, and the performance of femininity and disability. We unravel the intricacies of power dynamics in the patient-doctor relationship, examining how these dynamics shape the healthcare experience for individuals with chronic conditions. She offers a candid exploration into the intersections of health, gender, and faith. I truly loved talking with Sarah, and this episode has a special place in my heart. Her honesty and emotion were so healing for me and for the younger version of me, who really needed to hear this at the time. 

Prepare to gain a deeper understanding of the multifaceted challenges that individuals with chronic illnesses face, as we navigate through Sarah's story with empathy, compassion, and a commitment to fostering a more inclusive and understanding society.  For more from Sarah, follow @lovethyselfcollective on Instagram and LoveThyselfBySarah on Etsy. 

Take care of your spoons!
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- INTRODUCTION -

[Musical Intro]

MOLLY  00:05
Welcome to The Sick Gaze Podcast. A series where we dive deep into the complexities of life with chronic illness, attempt to break down gendered barriers within healthcare, and advocate for disability justice. Drawing inspiration from Prof. Laura Mulvey's feminist concept of 'the male gaze,' 'the sick gaze' challenges the existing narrative norms by offering a platform for diverse lived experiences. In a world where stories are often filtered through abled-bodied perspectives, our podcast strives to bring visibility to invisible conditions. Join us as we navigate the complexities of life with chronic illness - fostering empathy, understanding, and ultimately creating a community that embraces and validates the stories that have long remained in the shadows. I'm your host, Molly Dickerson. Today I sit down with Sarah Klotzbach, a 23-year-old woman living in Columbia, South Carolina, who enjoys spreading body positivity and making art. Sarah lives with hypermobile Ehlers-Danlos syndrome, Mast Cell Activation syndrome, Postural Orthostatic Tachycardia syndrome, also known as POTS, and some other undiagnosed conditions. Sarah guides us through day-to-day life in her shoes, her relatives' understanding of illness through a Christian background, gender roles when living with disability, ableist stereotypes, and the performance of femininity in the power dynamics within the patient-doctor relationship. I really can't even begin to explain how much I love doing this episode with Sarah and I think we get into some really interesting topics that hopefully make us all think a little bit deeper about what disability truly means.

SARAH  01:45
Hi, I'm Sarah Raven, and some things that I love to do... I'm super into arts and crafts. I have my own little small business where I make earrings, body-positive paintings, and just body-positive art in general.

MOLLY   01:57
That's so awesome!

SARAH  01:59
Yeah, it's a lot of fun and it gives me something to do when I'm at home by myself.

MOLLY   02:03
Absolutely. And how old are you?

SARAH  02:05
I'm 23.

MOLLY   02:06
Okay, and what are your pronouns?

SARAH  02:08
She/her

MOLLY   02:09
Perfect. Can you make me a pair of earrings? Can I pay you? That's so awesome!

SARAH  02:12
Yeah, I would love to.

- LIVED EXPERIENCE WITH CHRONIC ILLNESS -

MOLLY   02:14
Okay, describe your chronic illness and how do you experience it in your body.

SARAH  02:20
So my overarching chronic illness is hypermobile Ehlers-Danlos syndrome, which creates a whole slew of other chronic conditions. My like three main conditions is the EDS, Postural Orthostatic Tachycardia syndrome or POTS, and Mast Cell Activation syndrome, or MCAS. I experience them in a lot of ways. They impact everything. from mobility, sleep, energy, cognition, like basically all functions.

MOLLY   02:57
When did your symptoms start? What were the first symptoms? And then how long did it take you to get diagnosed with these things?

SARAH  03:03
They kind of started showing up around like ages 11 to 12 where I was getting. very frequent infections, particularly strep throat, and they would last for months or even like a year at a time. I had strep throat for a year, from ages 11 to 12, and it was not responding to antibiotics. And then a whole slew of other issues came along pretty quickly from there. It was just like rapid downfall. I was a competitive figure skater and very... very hypermobile, but I was praised for being flexible. I didn't know this was a bad thing. I thought it was a good thing. And it didn't cause me issues at the time. So that was like, obviously the first visible thing, but it wasn't, I didn't see it as a bad thing. I didn't think it was like a medical thing. I was like, oh, I'm just so flexible.

MOLLY   03:55
Yeah, yeah. I've actually heard that a lot from people with EDS. Being competitive dancers or, you know, ballerinas or doing sports, all those things. How does it affect your day-to-day? I know that's a lot, it's a big question.

SARAH  04:10
Yeah, it affects a lot of things. I'm not really able to do a whole lot on my own at this point. My health has gotten to the point where I need help with getting dressed, making food, making coffee. I can't take care of my pet. I have to kind of let my husband do a lot of those things. I'm not able to do a lot of social activities. I could do little bits of time and then I heavily pay for it after. I haven't been able to work for years and even when I did like work, I was very, very limited with that too. I have trouble with like walking around the house or you know things like that because now I use a wheelchair to get around a lot of the time. So really most things are affected to a huge extent at this point.

MOLLY   05:00
How do you manage your health every day and is that work visible to others?

SARAH  05:05
Managing is not really seen by other people most of the time since I'm at home on my own the majority of the time. It's a lot of like listening to my body what... symptoms are screaming the loudest when something's concerning. I have to make decisions like, oh, how much medication of this should I take? Or do I need to lie down? Or do I need to be sitting up? Or do I need to eat this thing or delay eating this? It's a lot of decisions which could make or break the rest of my day depending on how things are going. But people don't really see that effort since. People aren't around me a big majority of the time and doctors definitely don't see that effort. I think doctors in general think that I'm just lazy and just laying about and like, oh, just cause I just want to, you know, but it takes a lot of thought and being attentive and listening to what my body needs.

MOLLY   06:03
Definitely. Have you heard of the spoon theory?

SARAH  06:06
Yes.

MOLLY   06:07
So it's like, you have to decide what your spoons are going towards, right?

SARAH  06:12
Yeah.

- STRUGGLE FROM CHRONIC SYMPTOMS TO FORMAL DIAGNOSIS -

MOLLY   06:13
You mentioned that you felt like sometimes doctors make you feel like you're lazy or just not working hard enough or trying hard enough. That leads me to how have your relationships with clinicians been? First of all, during the process of searching for a diagnosis, and then after having a diagnosis as well.

SARAH  06:32
Initially, before I was diagnosed and I started showing symptoms and things, I had a lot of trust in doctors and I felt, oh, they're going to be able to figure out what's wrong with me. Like, they know all this stuff, you know.

MOLLY   06:44
Doctor knows best.

SARAH  06:46
Yeah. I had a lot of expectations that were very quickly squashed. because you know immediately they're like, oh you're a young woman, you're being over dramatic, a hypochondriac, you're anxious, oh are you sure it's not your period, all those things. Very quickly I realized, oh these doctors aren't on my side and they weren't listening to me or... trying to do anything to help. And then now that I have the diagnosis, some select doctors treat me well, but there's still a lot of doctors that have their own opinions about things or think that a lot of it is still made up. Like some people don't even think that some of the diagnosis are legitimate. They're like, oh, that's not... I don't know, I was at the ER one time and this doctor told me, oh, Mass Cell Activation syndrome, like that's not a real condition. He was like, that doesn't exist. And I was like, you can literally see my eyes swollen shut from an allergic reaction.

MOLLY   07:49
It exists. It's very real. Look it up, maybe. I've heard that so many times about functional pain disorders as well, and Chronic Fatigue Syndrome and fibromyalgia. And it's like... These are what we diagnose people with when they're in chronic pain and they're in chronic pain for a reason. So maybe we don't know the mechanisms of how something works, but it's definitely real. And even now at MUSC, at The Norris Lab, they're looking for the gene for hypermobile EDS, which is... finally we'll have some concrete proof. And we don't have to be like, please believe me. How long did it take you to get diagnosed?

SARAH  08:23
So from the start of when I had. visible symptoms. It took me about 12 years.

MOLLY   08:31
12 years. Oh my gosh! Okay, why do you think it took you so long to be diagnosed?

SARAH  08:36
I know it was because doctors were always like finding something going on in my personal life and making that as an excuse. Oh, it was like, you know, a growing young woman, it's your, it's obviously just hormones, you're gonna grow out of it. And then when my mom was diagnosed with cancer, they were like, oh, it's because you're depressed because your mom is dying of cancer. And then when my mom died, it was, oh, it's because your mom died of cancer. And then after that it was like, oh, well it's because you've gone away to college. It's a lot of adjustment. You're just having an adjustment disorder. You're having a hard time adjusting to all these new life changes. There was always something and it was because they couldn't find anything. So they were insistent, oh, it's obviously all in your head. Even at one point they were like, well maybe you're schizophrenic. Like this one doctor in the hospital told me you're gonna have to be in a mental health facility for the rest of your life if like you don't get your act together basically.

MOLLY   09:40
Like scolding you? Wow.
 
SARAH  09:44
And I was, I was 17.

MOLLY   09:46
A child. First of all, I'm very sorry about your mom. Second of all, I'm very sorry that was used against you. And I think it's wild how they said, no, this is the thing that you're adjusting to that's causing this illness. But then they switched what the thing was so many times. So it's like, what is it? What is it really? What are you trying to say?

SARAH  10:07
It's just, I can't adjust to anything. Oh, it's always gonna be something in your life.

MOLLY   10:11
You were a child when this started, right?

SARAH  10:13
Yes.

- PROCESSING INTERNALIZED MEDICAL GASLIGHTING -

MOLLY   10:14
So were there any times where you found it difficult to trust that what you were feeling was real? Did you ever internalize that? If someone's telling you you're making it up, you're "crazy" (in quotation marks). Is that something that was hard to combat?

SARAH  10:30
Yeah, all the time. I developed really bad depression for a huge chunk of my life because I thought that it was all in my head. I thought I was crazy. I mean, honestly, even now, like I still gaslight myself every now and then. I'm like, are you sure you're really this sick? Are you just, you know, making a big deal out of something? I mean, so I still like even now apologize to people for things because I'm like, well, maybe I'm just being, you know, too dramatic about this. And then all the time it's like, oh, do I go to the hospital for this? No, I'm just making a big deal out of nothing. Like, oh, you're just, you know, you're just having a bad day. Like, it's OK.

- U.S. CULTURE CLASH BETWEEN CHRISTIAN NATIONALISM AND MEDICAL SCIENCE -

MOLLY   11:10
Right. And, you know, you probably had to develop a pretty high pain tolerance. So on a day where you're like, 'should I go to the hospital?' would be like someone who doesn't experience chronic pain's like 10, 'I have to go to the hospital right now.'  And I think, you know, you adjust to this every single day. Having to weigh out your options, right? What do I do today? What's my choice gonna be today? How did other people besides doctors react to your illness and your sickness?

SARAH  11:35
Well, a lot of people also try to blame it on specific things going on in my life. So I grew up in a very religious environment. So a lot of the people that I was around were church people and like religious family members and everything. And so a lot of it was, it's because God's testing your faith. You're not praying enough. You need to be praying and getting into the Bible more and you're not trusting God to heal you. So a lot of times I was like, am I really just this sick because these people are right? I'm not praying and trusting in God enough. If I did, then you know, these bad things wouldn't be happening to me. And I know they always had their opinions. So it was like, oh, we don't think you should be doing these treatments and stuff. Really, it's just a faith issue or always blaming for not trying holistic methods if I went with like a non-holistic thing. So there's like always opinions from that front too.

MOLLY  12:33
Like no matter what you do, it's gonna be wrong.

SARAH  12:36
Yeah, there was always something wrong with whatever choice I made. I mean, I had people tell me, you shouldn't get that brain surgery for the mass on your pituitary gland that's causing you to go blind. They're like, you shouldn't get that. God told us...

MOLLY  12:51
"Just pray."

SARAH  12:52
This lady came to me crying and she's like, God told me that you shouldn't get this surgery and that you need to just trust in him. If I had done that, I would be permanently blind.

MOLLY  13:03
Right.

SARAH  13:04
And who knows what else.

MOLLY   13:06
How does it feel having to kind of discard other people's opinions and filter through all of the people's opinions about your body and your healthcare?

SARAH  13:14
It's really hard because I like to please people. I go back and forth between like trying to make people feel like heard and not, I don't know. Especially people that I know care about me, like I don't want to like discard the things they say, but then also like it's really hurtful to me and I have to set hard boundaries, which I've never really been good at setting boundaries. That's definitely something that I've had to work on now because I take everything people say too personally and it's just hard to compare my voice to like other people's voices.

MOLLY  13:49
Well, especially like if your voice has been trampled over time and time again - not only from the people in your life, but what it sounds like is from healthcare professionals as well who are supposed to be the authority figure and the people who know best in this situation. So I don't think that you're too sensitive at all. I think this is a salt in the wound, you know? Over and over and over again. So what are some of the narratives that you hear from other people about illness or disability that maybe they don't know is harmful, but it does hurt you?

- SHEDDING SOCIETAL SHAME AROUND THE USE OF MOBILITY AIDS -  

SARAH  14:18
The biggest thing was people... for years, I really wanted to use mobility aids because I was losing a lot of my mobility and it was just causing a lot of issues for me. And a narrative people have is if you start using mobility aids, you're 'giving into your illness.' Don't give into your illness. Or people would say like, you're not disabled. Don't put that label on yourself. There's all these shameful things about being disabled, using mobility aids, what will you look like to other people versus if a mobility aid is going to help you, then using it isn't giving into your disability, it's actually giving you a better life and more independence.

MOLLY  15:00
It's liberating you.

SARAH  15:02
It's a good thing. If I didn't use a wheelchair, I would be fully confined to my house.

MOLLY  15:07
Right. And people say confined to a wheelchair when really it's creating more mobility and more ability to go out.

SARAH  15:14
I'm not confined to it. Like, I choose to use my wheelchair. The ability to be able to do fun things when I'm having a okay-ish day is something that is really nice, because otherwise, I would just never get to do anything.

MOLLY   15:28
It's like people feel uncomfortable with disability when they see it. They're more comfortable when it's invisible, but at the same time... way more willing to say it's not real when it's invisible. So it's just kind of like this, how do we balance that, right?

SARAH  15:45
Yeah, so since I started using a wheelchair for the past year, I used to not get approached by people in public when I, like, didn't use mobility aids. But now almost every time that I'm in public, some like... random old person or some other person, they just come over and they're like demanding of what's wrong with you, why do you use a wheelchair?

MOLLY   16:05
Are you serious?

SARAH  16:07
Yes, all the time, I always get approached.

MOLLY   16:09
Like you have to explain all the time to random strangers about your life?

SARAH  16:12
They're demanding like my health information and a lot of times I don't share anything but sometimes I do and then their response is usually like, "Oh, just wait until you're my age. Just wait until..."

MOLLY  16:24
Shut the fuck up, honestly. That's so annoying.

SARAH  16:28
It is. And yeah, I never got approached before. I mean, and I get approached by random people like offering their... Well, they don't even offer. They're like, I want to pray over you. And I'm like, no, please don't.

MOLLY   16:41
Please don't.

- INTERSECTIONS OF IDENTITY, CARE, AND DISPARITIES -

MOLLY  16:43
How do you think your intersections of identity impact your care?

SARAH  16:45
I mean, I know the biggest thing that changes my care and the things that doctors say to me is the fact that I'm a woman.

MOLLY  16:55
And you were a girl, like 12 year old, right? When everything was starting to...

SARAH  16:59
Yes.

MOLLY  17:00
So age is important too.

SARAH  17:01
Age was huge. I mean, growing up, it was you obviously don't know what's going on in your body because you're too young to understand you're too mature or puberty, starting menstrual cycles and all that. So that was huge because it was, we know better than you. I'm a doctor, very much a power thing. The time that I was in the hospital at 17. My family wasn't there because my mom was having cancer surgery. So I was in the hospital by myself. The abuse that I suffered from those doctors because I was a teen girl on my own, they knew that they could treat me that way because there was nothing that I could do about it.

MOLLY  17:41
What were the things that they were saying to you?

SARAH  17:43
The biggest thing was, because I didn't have someone there advocating for me, once they determined that they felt it was only a mental health issue and that there was no 'health' things going on, they stopped all of their regular doctors from coming to see me. And the only doctor that they would allow me to be seen by was a psychiatrist. The neurologist and the other people that I had been seen before, they stopped coming. It was just the psychiatrist. And he would... corner me and blame me for anything. He was convinced because I was severely underweight due to being very sick... And he kept blaming me for obviously not eating enough. And he would watch me eat and check the trash to make sure I didn't throw away my food.

MOLLY  18:33
And you also were undiagnosed with Mast Cell, right?

SARAH  18:37
Yes.

MOLLY  18:38
So you were having problems with certain foods causing reactions in your body.

SARAH  18:41
Yes.

MOLLY  18:42
And that was not taken into consideration?

SARAH  18:44
No, nothing was taken into consideration there because I hadn't been diagnosed with anything yet. Because with Mast Cell, it's not like you have maybe a full allergy to something all the time. It's not like, oh, you take an allergy test and oh, I'm deathly allergic to eggs or dairy or something. But I have very severe allergic reactions to things that don't show up like a normal allergy. So they think, oh, you're just like a picky eater or you're being, you know, dramatic because they don't believe that those reactions are real. Even though there is very strong physical evidence for reactions to things. I mean, when I react to stuff, it's very obvious. But I literally had to push so hard just to get an EpiPen. 

MOLLY  19:28
It's visible when it happens, but so often you're not in the hospital when it happens. So it's, they're so quick to be like, well, that's not real.

SARAH  19:35
Yeah, and that's why whenever I have different medical episodes and things that are visible, I take pictures and videos, even though a lot of times when I take those pictures and videos into doctors appointments, they're like, "Oh, we don't need to see those." I say no, like I'm going to show you because I want you to see what it looks like.

- PATIENT HEALTHCARE EXPECTATIONS AND PREPARATIONS -

MOLLY  19:52
So that brings me to the question of how do you prepare for doctors visits? What work are you doing beforehand if you're doing any to go into the doctor's visit and have a successful visit?

SARAH  20:03
I do a lot of research and organization beforehand, so I'll kind of write out what specific things that I want to touch on because I have really bad memory issues and especially in an intimidating appointment it can be hard to remember what specific things I want to discuss. So I will do that. And a lot of times if there's a specific test or medication or something that I'm kind of wanting to know more about or if we could do those things, I try to research those ahead of time and depending on the doctor I will maybe print things out to give to them, but it has to be a specific doctor because some doctors can get very... It hurts their ego when you know too much or know more than them.

MOLLY  20:50
Can you elaborate on some of the responses you've received in clinical encounters when you're coming in with this patient expertise?

SARAH  20:58
The majority of doctors get upset and can be very condescending and kind of bulldoze over you when you share specific conditions that you think you might have or tests or medications or treatments or anything that you think might be helpful, especially like male doctors. But I have had this with female doctors too, but it's definitely a lot more, like, male doctors... because they don't know as much. I think they feel threatened by oh this like young woman knows these things that I don't know, so they tend to be very quick to dismiss. Oh, no that couldn't possibly be that - they try to make you feel stupid. They're like, "Okay, Dr. Web M.D.," like, way to go like researching this stuff but it's obviously not that.

MOLLY  21:45
Well, it's like are you supposed to just go home and forget about your, like, I don't understand. You know, it's like, you go home, you live with this every day, you're in pain every day. At some point, you get to a point where you're desperate not to be in pain every day, and then you go to the doctor every few months when you can actually get in, and then... if they don't give you anything to help you, or they don't say, hey, let's figure it out together, what are you supposed to do, just not research it?

SARAH  22:12
I don't know, they just expect me to be happy with, okay, well, we'll see how things go and we'll see you in another six months or whatever. They just expect me to be fine with that. If you're not gonna do anything to help me with my health, then I'm going to take the initiative to try to help you help me. I've got nothing but time to research and I'm the one sitting in my body. So the fact that doctors think that they know what's going on... I've literally had doctors say, those symptoms aren't happening. Like, no, you're not experiencing that. I'm like, are you inside my body right now? Do you want to trade spots like Freaky Friday or something?

MOLLY  22:44
Let's do a little tradsies right now. Let's see how fast you switch up, okay? What are your ideals for a clinical encounter in the doctor-patient relationship versus your expectations based on your lived experiences?

SARAH  22:56
Well, I would really like to expect that someone in the medical field that I'm meeting with would be compassionate and wanting to help their patients and wanting to figure out what's wrong with their patients. Actually being investigative and actually doing their job rather than coming in for a couple minutes and dismissing all the questions or dismissing concerns and then saying, yeah, I'll see you back in six months. Cause the majority of appointments, spend any time with you, they come in - after waiting for like 45 minutes, an hour or longer sometimes you're sitting in that waiting room or they take you back and you're sitting back there - and then they come in and they're only in there for like two minutes, maybe five minutes max. And they ask like, "Oh, what's wrong? What's going on?" And then you tell them and they just kind of brush through that or will dismiss it, question it, be like, are you sure that's actually happening? I know a lot of times doctor's appointments, why are you in a wheelchair? That's something that they latch onto immediately. A lot of doctors think that using a wheelchair is like a death sentence. It's like you're giving in to your condition, basically like what I said other people think. So they're always quick to be like, you need to be moving around, exercising. I'm like, I literally can't. I mean, I did PT for years and years and years and failed it, and it was causing way more issues. My physical therapist literally told me, you should not be coming back. Like, this is not good for you.

MOLLY  24:27
Well, so much physical therapy focuses on stretching and not strengthening the deep stabilizer muscles. And with EDS, your ligaments are so collagen deficient and weak that your muscles have to like overcorrect. That creates so much stuff. And then we're having physical therapists literally stretch out your ligaments bigger. And I'm like, you are making it so much worse for the patient because you haven't taken the time to understand their body.

SARAH  24:51
Yes. On that, another thing, because doctors know that I have EDS now, and so they're automatically like, oh wow, she's like really hypermobile and really stretchy. So they're always yanking on me. They're like, oh, let's see how far this joint goes back. I was at the orthopedic doctor a couple weeks ago because I'd like to get shoulder surgery because my shoulders dislocate constantly... He literally like pulled my arms and my shoulders back and he's like, does that feel like it's gonna dislocate? He's like, how does that feel? And then he proceeds to pull it back further when I say yes!

MOLLY  25:24
You're like, yes, it's going to dislocate. Please stop!

SARAH  25:27
He kept yanking on it and he's done this like the past couple times I've gone, which is why I'm going to see someone else. But it's like...

MOLLY  25:33
I mean, seriously.

SARAH  25:34
Common sense.

MOLLY  25:35
Seriously, that just. That is wild.

SARAH  25:37
Yeah, like if I tell you this joint dislocates all the time, do you want to dislocate it in your office? Like, is that what you're trying to do here?

- DISCRIMINATION IN PATIENT-PROVIDER RELATIONSHIPS -

MOLLY  25:45
So kind of digging into the feeling, when a doctor is dismissing you in healthcare setting, how does that feel? And then how does that make you go into the next visit with someone?

SARAH  25:55
Because of having so many bad doctor's appointments, the more that I have, it... develops a really strong anxiety. I get, usually like when I'm in doctor's appointments, they're like, oh, your blood pressure's like really high. And it's because I go into fight or flight mode once I'm in these appointments - because I know you're either really hard advocating for yourself. or it's a shutdown. And sometimes I don't have the energy to fight with these doctors. And so I do shut down and I'll let them say or do things that I don't agree with because I just don't have the energy to fight it. And then when I do fight it, it takes so much out of me. I mean, a lot of doctors appointments will send me into really bad flares because it just takes so much energy to push for the things I know that I need and to convince people to listen to me.

- INTERSECTION OF GENDER AND DISABILITY -

MOLLY  26:51
How do you think the intersection of being a woman plays into your experience fighting with doctors?

SARAH  26:58
I think that a big chunk of it is being a woman. I am like so convinced that if I was a male, they would not be writing me off as a hypochondriac or blaming it on, you know, anxiety and hormones and being emotional or body weight even. Like they would not be blaming all these things on me if I wasn't a woman. Like a lot of times my husband comes with me to appointments. They ask him, they're like, do you think that she needs this medication or like, does she look like she's having a really hard time with this? How have her symptoms been recently? Hello, I'm the patient! You can you can ask me.

MOLLY  27:38
It's like you need someone else there with you to be believed.

SARAH  27:43
Yes.

MOLLY  27:44
Even though you're the one experiencing it in your body.

SARAH  27:47
Yes. Yeah. Well, I've literally had doctors ask him, like, do you think she should continue on this medication?

- THE SICK GAZE -

MOLLY  27:53
Like when you're going to the doctor, how do you present yourself?

SARAH  27:55
That is tough. There's a fine line between dressing comfortable and I have a lot of like loose sweats and things which are like really comfortable for me, but it can look like - Oh, you're not putting in effort to get better or like you're depressed or something, but then like if I dress up too nice and by too nice (I don't even mean like that nice just like wearing, you know a cute outfit or something) they're like oh, she's obviously not that sick if she can like present herself in a cute outfit. So I have to kind of pick a balance. I don't want to dress too dumpy or whatever, but I also don't want to dress too nice because I want them to be able to see that I'm sick, but also not think that I'm depressed sick, but then also not think that she feels well enough that she can present herself well. So obviously we don't need to help her.

MOLLY  28:47
Did this change from when you weren't in a wheelchair to when you were in a wheelchair? Was it different in the healthcare experience?

SARAH  28:53
Yeah. Now that I use a wheelchair. Doctors think that I'm trying a lot less. So they see me as like somebody that's giving up and doesn't want to get better.

MOLLY  29:05
Right, and I should say use a wheelchair, not in a wheelchair, right?

SARAH  29:08
Yes.

- IMPLICATIONS OF PERCEIVED SOCIAL ROLES -

MOLLY  29:09
So I kind of want to go into like, how does your illness affect your ability to fulfill any perceived social roles? So that might be like woman, student, employee, wife, friend, leader... any of those things. Like how does chronic illness affect your ability to fulfill those?

SARAH  29:29
Yeah. Um...

MOLLY  29:31
Not that those are like right things to feel like you have to fulfill, but yeah...

SARAH  29:34
I have been told before I got married when we were engaged, I was told if you don't feel well and can function enough this amount of days a month, then you're not going to be a good wife. It was somebody in the church that like had high leadership and was telling me cause he was counseling me and said, you shouldn't get married because you're not going to be able to be a good wife because you can't function this amount of days or whatever. The expectation is, you know, to be able to support your spouse through doing, you know, the house-ly duties, being able to contribute financially, but especially like around the house, being able to cook and clean, offer full emotional support. There is a heavy expectation for childbearing as well, which I'm not going to do hysterectomy, like it was the best thing that I did for my health, like I needed to get that done. You know? So I'm not going to be providing that. Even now, I've been told by people like close in my life, you need to be doing more to be a better wife. Your husband does so much for you. He sacrifices so much like you need to. be doing more, you're not trying hard enough, you need to do this to support your husband, all this stuff, and making me feel really terrible for not being able to do basic things around the house. Unfortunately, he does have to do a lot of things. There's stuff that I wish I could help with. But I do offer a lot as a partner, beyond the regular things that are expected of as a woman. I can offer... a lot of emotional support, being there with him through things - even though I'm not able to do all the stuff that people expect me to do.

MOLLY  31:18
So that kind of brings in the role of caretaking and caregiving. And I think oftentimes people confuse disability for like always being only in the state of care, receiving care. But really... all people at all different times in our lives are giving or receiving care in different parts of their lives. So what does it mean to give and receive care to you?

SARAH  31:42
For me, giving is, as a wife and as a friend, I have a lot of friends that I have been offering support to and I can't do the same things that they do for me, but I do really try, even when I'm having a really hard time, which is a big chunk of the time, like I'm a great listener and offering advice if people want it or being able to support in that way and be empathetic. I think my health experiences really has helped me to be a more empathetic person. I have a lot more compassion for people than I probably would if I hadn't dealt with so many things in my life. When I feel that I'm not offering much to people and I feel like I'm a burden to other people, I have to remind myself that I do have things that I am like offering and giving to other people. As far as receiving care, there are the practical things which are important. A lot of times I do need help around the house or doing my everyday activities and you know getting to appointments and taking me to the hospital or providing care when I'm like at my lowest you know medication or making food for me or helping me you know with bathing or like any of those different things. A big part of care that's like really important is the emotional care because although I have all these physical needs, there are a lot of emotional things that come with being really sick all the time. It is really, really discouraging and sad like a lot of the time and I need people to be there to listen to me, also remind me of like the good things in life because it can be really difficult to remember those things. So people taking the time to help me to like enjoy my life. Friends taking me out to experience things when I am able to, or even when he's tired after like a long week of work, he knows, taking me out for like a little coffee date or something like that can be like really good care for me as well because it gives me things to look forward to in my life.

MOLLY  33:41
How has who you are changed since living with a chronic illness?

SARAH  33:46
It's changed a lot, like a lot of different aspects. I mean, because I've been through so much, I've become a lot stronger and more resilient that now, you know, when other things happen, I have like that built-up skill to be able to survive and try to like make it through. But also, before I used to be just in survival mode and I wasn't able to do things that I enjoyed. Whereas now I have been really making that effort to find things in my life that I can like do and enjoy from like being creative and work on those skills.

MOLLY  34:26
I think you are very resilient, like so strong and resilient, and it's unfair that you've had to be. And then for people to say you're not trying hard enough, I think that is so fucked up. And so... so much the narrative. I want to commend you, first of all, like, I get it. And I think so many other people who are gonna listen to this are gonna get it. You're forced to be resilient and just survive. And then afterwards, when you're still sick, but you're slowly rebuilding, right? It's a process then, too, to work through all the trauma you experienced.

SARAH  34:59
Yeah.

- CHRONIC ILLNESS, DISABILITY, AND SELF-PERCEPTION -

MOLLY  35:00
Can you identify any recurring thoughts or feelings that have come up about chronic illness or disability and your self-perception since living with one?

SARAH  35:09
The biggest thing has been I grew up seeing that being successful, whether that's like having perfect grades or making like a good amount of money, having like these visible like signs of success, that those are like determination of your worth. How to be good.

MOLLY  35:22
Yes.

SARAH  35:23
The things that I did was my worth. Now that I can't work, I'm not in school doing the things that provided me the worth and what. People in my family and people I knew saw it as what made a worthy person. Now it's a lot of times I get really frustrated with myself because I'm like, with my creative stuff that I do... I've barely made any money doing that, almost nothing. I really enjoy it, but it's not bringing in money and we're struggling financially like a lot because being a medical patient, it's expensive. I, a lot of times, feel like really guilty for doing these creative things because I'm like... What's the point of me doing these creative things when they're literally not making us any money? I'm just being silly, like, doing the stuff that I enjoy because it's not providing anything.

MOLLY  36:11
In our world, we very much value based on how much you're producing or consuming in a very tangible way, right? And I think that can be internalized a lot. What's the name of your art business?

SARAH  36:23
It's called Love Thyself Collective. It's on Instagram and Etsy. Yeah, you can't be perfect at everything anymore. I know halfway through getting my bachelor's degree, it was like a really big humbling and soul-crushing moment when I realized I can't keep all A's. I'm not going to keep my 4.0 GPA. And it was so devastating at the time, like the worst thing ever to happen. But then, now, I've really come to learn those things don't really... you know, measure who I am as a person, because I've always been known as "Sarah, she's the person with really good grades, she's so academic, so smart." So, I've always been defined by things like that, and then now I'm having to rework through those negative beliefs of my worth only being in what I produce in perfection. It takes a lot of effort to not beat myself up over imperfections now, even though there's literally no way I could be perfect. Like it's not gonna happen.

MOLLY  37:22
It's like instead of these like external measurements, it sort of led you to choose to look more intrinsically about your worth. And it's not like, "Oh, this chronic illness, this was meant to happen to you so that you could figure out who you are." Like no, you took what happened to you and then you chose to like work through it and grow through it. How can friends and family better support you with chronic illness?

SARAH  37:46
One, I often feel like a burden or like I'm too much. If I like share too much about these things, people are gonna leave because, oh, she talks about this all the time. Like people get tired of me doing that. So I need the reassurance from people. that they're not tired of supporting me or they don't view me as a burden or that they want to listen and they want to offer support because I do really worry that all of a sudden people are gonna just ditch me because they've decided that they're tired of doing this anymore and they've realized this is gonna be my life. Like this is how I'm always gonna be because I've had a lot of people, former friends tell me. being my friend was too much for them, that it was too difficult for them to be there for me, and they've just ditched and left. So I need that reassurance from people, the words of affirmation, and really just quality time too. Even on my worst days, I always feel better when someone's around. Like, we don't need to be doing anything. I just like to have people near me, and I know it makes people uncomfortable sometimes to be near me when I'm in lots of pain, or if I'm a mess... But just having people around, it shows me that I'm not alone. And so I like when people can just sit with me in those things.

MOLLY  39:08
Definitely. And in reality, you're probably only sharing it a fraction of the time that you're feeling it.

SARAH  39:14
Yes.

MOLLY  39:15
So it might seem like a lot to someone who doesn't experience chronic illness, which is all the time every day. But, you know, you're holding back so many times from saying something, right? Why do you think there's such a discomfort around seeing someone disabled?
 
SARAH  39:29
I think people really like to have solutions and they like when things are like easy to fix. The thing with chronic illnesses is a lot of times they're not fixable and you're always going to be that way. There's symptom management and stuff, but like you're always going to be sick and people don't really like that because it feels icky to know like, oh, there's nothing I could do to help this person or there's not a solution to this thing...

MOLLY  39:59
Or like... there's nothing that they did wrong.

SARAH  40:02
Yeah.

MOLLY  40:03
So that could just happen to me too.

SARAH  40:05
Yeah, I know people don't like to think that they could be disabled, but like literally anything. I mean, you don't have to have any pre-existing stuff. Like, I mean, even just like a car accident or like literally anything can happen to make you disabled. Or you get COVID and long COVID, like, tons of people who'd never had health things got COVID and then now they're, like, permanently disabled. And that makes people uncomfortable. Cause there's like a difference between like regular illness versus chronic illness. Like people don't seem to understand that chronic means that it's chronic, like, you're gonna have that. And so they're always like, oh, are you better now? Like you're not sick anymore? And I'm like, no.

MOLLY  40:50
Right. It's chronic babes.

SARAH  40:52
Yeah, like they'll say, "Oh, like. I hope you get better soon." And then they are always like, "Oh, you look really, you look like you're smiling in that photo. You must be all better now." And I'm like, I mean, I'm masking. I smile and laugh all the time. That's another thing. In the hospitals, whenever I'm like in the ER or anything, if I am like not screaming or, you know, you're like laughing or you're able to like talk coherently, then all of a sudden they're like, "You obviously... your pain isn't a 10. Like there's no way your pain is that high." I'm like, I deal with this every day. My pain tolerance is all the way up here. I have had to learn to be able to function and look like a normal human being to other people because it makes people uncomfortable to see if I visibly showed the way that I feel all the time.

MOLLY  41:45
Right. And when you're at the doctor, especially you said, Sometimes you're too exhausted to have to fight with them. How do you think gender plays into like masking or trying to appear like pleasant to the doctor?

SARAH  42:00
Well, you need to seem like level-headed. If you show any like signs of this health stuff's really hard on me, you know, and it could be discouraging or like depressing or anxiety or anything like, if you show any of those things, they immediately latch onto that.

MOLLY  42:17
They're like, oh, you're anxious and that's why you're making this up.

SARAH  42:20
Yeah. So they immediately latch on to those things. So I have to make sure there's like a balance between, you know, putting a positive spin on things and like not showing exactly how much you're suffering like emotionally from things because you don't want them to latch on to that. But then also you don't want to be too like positive and like upbeat and stuff. Oh, well, it's obviously not that bad. And, if you're even slightly emotional, then it's hormones and you're being a woman and you just, you know.

MOLLY  42:49
What toll does that take having to fit yourself into that narrow space?

SARAH  42:53
It's really exhausting. It creates a lot of mental health issues on its own. I didn't have like mental health problems until I was chronically ill and dealt with all this stuff. And so I have developed mental health things because there's all these expectations of how like you're supposed to. present yourself or what you have to do for all of these appointments. And like, it creates so much anxiety. I mean, it's...

MOLLY  43:23
It's like the re-traumatization in healthcare.

SARAH  43:27
Yes, I've been diagnosed with PTSD, but like medical PTSD from experiences with doctors and with medical treatments. Like it's traumatizing.

MOLLY  43:36
I mean, even what you said about being there by yourself as a 17-year-old. And nobody's taking you seriously and you have no parents there to say, "Hey, she's actually not an anxious kid. I don't know why you're saying this." Right?

SARAH  43:47
Yeah.

MOLLY  43:49
I can imagine that would be genuinely such a terrible experience that would stick with you, right?

SARAH  43:55
Yeah. At that time I was scared they were going to like... cause they were talking about forcing me into a mental health rehab facility and I have no say if they could do whatever and of course they're not going to listen to a teen girl. And I still feel they don't listen to me now as an adult. I mean, that's why I always bring my husband or a friend with me. I never go to appointments by myself.

MOLLY  44:16
What was it like in the process of getting a hysterectomy? Was that something that you went in knowing that you were gonna ask for, or like, did they kind of fight you on that, or what happened with that?

SARAH  44:26
So I've known that I wanted one. I had it last year, so it's recent, but I'd wanted it for... a couple of years because I've had such debilitating periods and very severe. As someone who I knew I wasn't going to be able to take care of children, that's not something that physically or mentally I can handle with how my health is.

MOLLY  44:50
Right, and it's a risk to your life to give birth as well, which is also a huge point of contention in the overturning of Roe v. Wade right now because it's devaluing disability live, it's saying, well, we don't really care if you might die.

SARAH  45:03
Honestly, like with the stuff that I have going on, I probably would die, or at least pass on a lot of this stuff to a child. Like, I don't wanna give this stuff to someone else. I mean, I knew that that's what I wanted to do. And I had talked to a couple of my female OBGYNs over like the years and said that's something that I wanted to do. But they were like trying to talk me out of it. "Oh, well, you're so young. You can't possibly make that decision. Like, you're definitely going to regret it later." All this stuff. But then last year, and I don't know, it's like a stroke of luck or something. I ended up with an OBGYN who was really amazing and really validating. And actually a man, shockingly. He was like so validating and affirming of my decision. And I literally, like ,after that appointment, because I was so used to not being listened to, I was crying. Crying from like relief. Wow, this doctor actually listened to me.

MOLLY  46:00
I'm not having to prove myself to someone.

SARAH  46:02
Yes, because I like had a whole argument planned. I was like, this is what I'm going to say to convince this doctor to do this for me. And then I like said what I felt about it and why I wanted it. And he was like, "OK, let's do it." And I was like...

MOLLY  46:16
How does that feel to have to sort of feel like you have to create an argument beforehand and sort of manipulate the situation because you can't just tell the truth? And then they say, well, you're over emotional or manipulative or crazy. And it's like, it's kind of this cycle of like, like traumatization, you know?

SARAH  46:32
Yeah, it really is. And it's just, it's such a shock when doctors actually do listen, which is why I always get so emotional. It's like, I don't know, one time I was an ER doctor, but treated me like really well and I'm not used to that. And I literally was like crying and thanking him over and over again for treating me well. And he's like, "I literally did the bare minimum. Like, I don't know why you're like thanking me." And I was like, honestly, cause I'm just used to being abused. Like thank you for not abusing me.

MOLLY  46:59
So how can healthcare providers better support you?

SARAH  47:02
Definitely being more open to listening and not. quick to assuming. You can't assume that you know what's going on with someone. Even just with like one conversation, you can't like assume. You need to be able to listen and treat your patients with respect and to not jump to conclusions. Oh, you know, they're just anxious or they're overweight or any of the things that doctors tend to like immediately jump to. Just sit and listen, take the time. Don't rush in and out. I know it's hard because there's lots of appointments, lots of people you have to see. I get that, but you're not gonna be able to provide the best care unless you listen and ask questions and you need to be creative and innovative. Like that's a cool part of being in the medical field is you're literally like a detective. You get to like discover what's wrong with people. I mean, that's really cool. Your job description, that's what you should be doing. You shouldn't just be quick to write people off just for the pay. I mean, like, you got to make your money. But also, why did you go into the medical field to begin with? Like, remember that.

MOLLY  48:15
And it's like the patients coming in with all this medical knowledge that they've accumulated over the years, they're helping you. They're giving you clues. They're helping you to be able to figure out what's going on and use your medical resources and access to facilitate healing and say, well, let me, I don't exactly know, but let me try this, or let me send you to my colleague who knows a lot about this, right? It's gotta be more collaborative.

SARAH  48:40
Yeah, you should be collaborating with your patients and with their other providers as well. If there was more communication between providers, I think that would be really helpful too. I mean, I know that's difficult, you know, unless you're like in the same hospital system, but even that, it can be difficult, but we're all wanting the same thing, you know, me to feel better. So let's work to do that together rather than not listening to the person who's actually experiencing the things, you know. Unless you can find a way to live in my body for a day so that you can figure out what's wrong with me, like, let's work on things together.

- BLAME AND SHAME -

MOLLY  49:14
I love that. Okay, if there's one thing you wish people could understand about chronic illness, what would it be?

SARAH  49:20
The reason that I'm sick isn't because of something that I've done or something I'm not doing. Sometimes this happens to people and we are chronically ill and disabled. This happens in life, but it's not because, you know, it's like anybody's fault or because, you know, you're being lazy. Sometimes things happen. And I wish that people could just understand that, offer the support to me without immediately trying to jump to conclusions like, oh, you're not praying hard enough, or you're making yourself worse because you're using a mobility aid, or...

MOLLY   49:53
Blame or shame.

SARAH  49:56
Yeah, like all these things. I mean, there's always something people can blame for it, but I just wish people would know, it's not always about cause and effect. Some people are born chronically ill, sometimes people just one day all of a sudden they are.

MOLLY  50:12
And at some point in everyone's life, they're probably going to get sick and need care. So people need to understand that it's not this like out of pocket. You must have done something wrong thing. You know, that's just that's life.

SARAH  50:25
Yeah.

MOLLY  50:26
Thank you so much for coming on the podcast and talking about your experiences. I really appreciate it. And I know your experiences and your resilience are going to inspire so many people.

SARAH  50:35
Thank you. It was a lot of fun.

MOLLY   50:37
If you want to hear more from Sarah. Check out Love Thyself Collective on Instagram, and also Love Thyself by Sarah on Etsy for vibrant body positive art and fun quirky earrings inspired by childlike wonder. That's a wrap for today's episode of The Sick Gaze Podcast. A big thank you to my mentor, Kathy Béres Rogers, Ph.D., for her invaluable guidance. Huge shout out to our podcast producer, brin ferguson-nesryn, for this week's episode and for turning our ideas into reality. And of course, thank you listeners. Your support means literally everything. So if you've enjoyed the journey, stay tuned for more. Until next time, take care of your spoons and thanks for being part of The Sick Gaze.

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