The Sick Gaze
The Sick Gaze
Unveiling the Unseen: Navigating the Landscape of Invisible, Chronic Illness with Alyssa Nickles
Welcome to the very first episode of The Sick Gaze podcast! On this compelling journey, we embark on a mission to shatter the silence surrounding invisible illnesses, amplify patient stories of enduring chronic pain, and dismantle the barriers within healthcare that disproportionately affect them. Today's guest is the amazing Alyssa Nickles, an artist from Charleston, SC, living with hypermobile Ehlers-Danlos syndrome, Mast Cell Disease, and craniocervical instability. In this thought-provoking episode, join our candid conversation with Alyssa, who shares her personal experience living with a chronic illness. Together, we delve into the complexities of how society perceives and understands illness when it remains hidden from plain view and attempt to conceptualize disability from a different perspective. Alyssa skillfully guides the discussion through the nuances of living with an invisible illness, exploring the impact on mental health, relationships, and identity. She recounts instances where her symptoms were downplayed or overlooked by medical professionals, sparking a crucial conversation about the need for increased awareness and empathy within the healthcare system. Tune in to this enlightening episode of The Sick Gaze to gain a deeper understanding of the invisible battles faced by many and to join the conversation on reshaping societal perceptions of chronic illness.
Take care of your spoons!
If you're interested in being interviewed for this podcast, click here.
- 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 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, and today we have a very special guest: an artist, student, and great friend of mine, Alyssa Nichols. In today's interview, Alyssa speaks from the heart about love, loss, and resilience in the face of sickness.
ALYSSA 01:14
Hi, my name is Alyssa Nichols. I'm 22 years old. I'm a student that attends Massachusetts College of Art and Design. I was born and raised in Charleston. One of my things that I really like to do is I specialize in fibers and textiles. So I make my own fibers and I work with natural dyes. It's labor intensive, but I really enjoy it.
- LIVED EXPERIENCE WITH CHRONIC ILLNESS -
MOLLY 01:37
Describe your chronic illness. How do you experience it in your body?
ALYSSA 01:41
I guess for like a backstory, I was diagnosed with Ehlers-Danlos syndrome. I have the hypermobility type. It manifests itself in my body in ways that's hard to describe from an outsider's perspective. One of the major things that I struggle with is chronic joint and nerve pain, dislocations, subluxations of joints, headaches, fever, fatigue, anxiety. It pretty much affects all the major nervous systems in my body. It makes me exhausted all the time and being a 22-year-old, it is hard to manage that and try and be an adult when you're so exhausted all the time.
MOLLY 02:24
So my next question was, how does it affect your day to day life? So that that's a good start for that.
ALYSSA 02:31
One of the hardest things is trying to understand how much energy I can put into things in a day. And, you know, if you're chronically ill or you have ADS, there's this thing called spoons and you have a certain amount of spoons when you wake up in the morning and you can only use a certain amount of them before you're completely exhausted. I think it's just navigating, like I said, how much energy I can put into stuff before I become completely exhausted or I am just so overwhelmed and anxious and tired and I just don't wanna do anything; I don't have any motivation. That's hard. Being a student, you know, when you're supposed to be grinding 24 hours a day, you know, trying to complete basic tasks and things and you're asking yourself: Why does it feel like I am living in a 90-year-old's body?
MOLLY 03:21
You're describing the spoon theory, right? Which is that spoons represent the energy you have to expend in your day. Do you engage in any particular activities or do any actions every day to manage your health? So do you use any specific spoons? And if so, what are they?
ALYSSA 03:39
Hmm. I'm still trying to actually manage that and navigate that. It's still a work in progress because I've been slowly becoming more symptomatic with my EDS. So, it's honestly very hard to figure out how many spoons I can use in a day. And sometimes I only have two, you know? Or I'll have like on a good day, maybe like five, but sometimes two of those spoons are taken up by just getting out of my bed, you know. or trying to get to class or sitting in a chair for a long period of time. So it can be just like, just so exhausting.
MOLLY 04:19
Just like the everyday things that healthy people don't think about?
ALYSSA 04:22
Absolutely.
- IMPLICATIONS OF PERCEIVED SOCIAL ROLES -
MOLLY 04:24
You mentioned being a student and that really relates to identity. So do you feel like your chronic illness affects your ability to fulfill any perceived social roles you might have for yourself or that others might have for you? Such as student or woman, daughter, employee, leader, mother... I know that's a lot, but if any of them stick out to you, how does chronic illness affect that?
ALYSSA 04:48
This might be a really long answer...
MOLLY 04:51
That's totally fine. Go for it. Go for it.
ALYSSA 04:55
All of those things, honestly, I guess I'll start out with like, you know, student. I was previously in the fashion design program at MassArt thinking that, you know, since it's 2023, things would be more inclusive and accessible. But In reality, if you can't keep up, if you're disabled at all, or have any chronic illness, or any type of pain, they view you differently and they think you're incapable of doing a job. So, I decided to halfway through my college career change my major to something that I could be more creative with, something that I could take my own time and focus on myself and my health because I was ignoring that for so long. And to the point where I was just in consistent pain, I couldn't keep up with my schoolwork, I had to take a medical leave. Like, I wasn't taking care of myself and I didn't know how to because, you know, EDS is so... it's not talked about, there's not a lot of research on it and it's different for everyone. It's different for everyone.
MOLLY 05:54
And if I'm right, EDS is somewhat more invisible, right, on the outside?
ALYSSA 05:58
Oh, absolutely. You know, like... Some people who have EDS, different severities, have to use accessibility devices. And some people don't, you know? We're not there yet. So when you look at somebody from the outside and they're not wearing a brace or they're not using an accessibility device, you're like, oh, they're fine. They look okay. But internally, you are in pain, you are suffering. And people don't take that into account because they don't have to deal with that every day.
- DISABILITY MASKING, COMPLICATIONS, AND CRITIQUES OF ABLE-BODIED 'PASSING" -
MOLLY 06:29
So you mentioned that you were going through your classes and not really listening to your body at a certain point, or that you were maybe trying to pass as a healthy, able-bodied person. How did that affect you?
ALYSSA 06:44
I think there's a specific example I can give. When you're in a fashion industry or when you're in fashion school, you are required to take a class called pattern drafting, and that is... four to five hour class of leaning over a table with rulers, pencils, consistently, like just stretching out your arms, your ligaments, your legs, standing for hours at a time.
MOLLY 07:07
Do you mean four to five hours every class period?
ALYSSA 07:11
Every class period.
MOLLY 07:12
So you are physically there for four to five hours every period? Oh, okay.
ALYSSA 07:16
Yeah, every period and you get a 10 minute break.
MOLLY 07:20
Oh my gosh. Okay.
ALYSSA 07:22
And even with accommodations, it's still being ignored, which... to me is crazy, but you know, academia can get away with so many things. And there was a point where I had a professor who ran a class like a military-style class, and I had dislocated my shoulder. I was shaking, silently crying in pain, a result of my body not being able to keep up with everybody else. And she completely ignored me until another student pointed out that I was visibly upset. And even after talking to her about it, she still didn't understand, didn't get it. And it made me feel like less of a person. You know, I had to make that conscious choice. I've had to give up a lot of things that I care about in order to take care of myself. And I also didn't want to be in a space where I wasn't felt like I was accepted. So I had to leave. And I'm really glad that I did. I'm so glad that I did. Going on to the next part of your question...
MOLLY 08:25
It's a big one.
ALYSSA 08:27
It's a big one. Actually, do you mind repeating that again?
MOLLY 08:30
So it's, how does chronic illness affect your ability to fulfill any perceived social roles that you might have for yourself or others might have for you? And some examples I found from research are like your identity as a woman, a daughter, a student employee, a leader, a mother, et cetera. How do you feel like chronic illness affects your ability to fulfill or meet these standards?
ALYSSA 08:53
As a woman and growing up, not knowing that I had EDS for a really long time, I was diagnosed when I was 15, people perceived me as lazy or... like a hermit almost, you know? I wasn't really socially out there, I was tired all the time and people didn't understand that, didn't wanna be around me, if I didn't wanna go out. They didn't understand that until this day, being 22. And it's just to be in your 20s, having fun, going out, experiencing things. It's not normal. I can't drink copious amounts of alcohol and be okay the next day. It takes me probably three days to recover from that when the average 22-year-old can just sleep it off and be okay the next day. The expectations of like, potentially being a mother, which is something that, you know, I've always thought about and I think I want at some point, but the harsh reality of it all is it is a genetic illness that can get passed down and you don't know the severity of that. And since there is no separating of the gene yet, you know, nothing that can prevent that from being passed on to the next generation... It's hard for me to want to have children with the possibility of them being in consistent pain. And that's hard to accept because, you know, "biological destiny." As a woman, you're supposed to want to procreate and the hormones make you, you know, when I see a baby, sometimes my hormones are like, ahh, I want that baby. But, you know, in reality, I have to think more than myself. I have to think about others in that regards and watching my sister, my mother. go through their struggles with their EDS - in and out of the hospital. I just don't know if I would want to ever put that on my child and it's hard.
MOLLY 10:53
It's a lot of loss. What you've described is a lot of loss.
ALYSSA 10:56
Yeah, and it's harsh thinking too. I don't think anybody really, as an able-bodied person, has to think about stuff like that.
MOLLY 11:01
When you're 22.
ALYSSA 11:02
When you're 22, you know?
MOLLY 11:04
I'm so sorry.
ALYSSA 11:05
Don't be.
MOLLY 11:06
It's a lot...
ALYSSA 11:07
It's a lot.
MOLLY 11:08
So one thing you said was that you felt like you were perceived as lazy. Have you rejected this idea or how do you combat this? If you do try to combat it, do you feel like the people have ever convinced you of that? Do you ever have self-doubt related to that?
ALYSSA 11:28
Oh, absolutely. I think we internalize things that we can't control. That's one of the biggest things I think for me, like, being chronically ill, I internalize the things that I can't control and think there's something wrong with me and all reality is just how I am and I can't change that. And so when my dad, sorry dad, always called me lazy growing up, you know, I felt inadequate and I felt sad because it's like, I didn't understand at that point why I felt the way I did, why I was so exhausted all the time, and there was no explanation I could give him to make him think any differently. And so even with my friend groups now, like, I don't - I can't go out all the time. I have to think about what's going on in my day-to-day life in order to make sure I have the energy and the capacity to do normal human things like going to the grocery store, making sure I get to class on time, making sure I don't fall asleep in class, you know? Getting sleep. because that's one of the biggest things I've actually learned recently is if I don't get sleep, I'm useless. When I mean sleep, I mean like eight hours of sleep, which is totally impossible.
MOLLY 12:39
We're not messing around!
ALYSSA 12:40
We're not messing around, you know? As a college student, that's so hard to get, especially as a working college student. And going on to the working part of it, being an employee, you know, I've been working in hair salons since I was 15 and I love hair. My hair is my everything and...
MOLLY 13:00
It looks so good.
ALYSSA 13:01
Thank you so much! Uhm, I think it's hard because my job, I'm not only apprenticing, but I'm working the front desk and I'm running around all the time - going upstairs, picking up boxes, restocking things, washing old lady's hair. I've even had conversations with my bosses before in regards to what I can and can't do. And there's just a lack of understanding.
- STRUGGLE FROM CHRONIC SYMPTOMS TO FORMAL DIAGNOSIS -
MOLLY 13:28
So you mentioned you were diagnosed when you were 15. When did your symptoms start and how long did it take you to get diagnosed?
ALYSSA 13:37
I would like to leave my symptoms started when I was like 10 maybe. And I didn't realize at the time why I was in pain. And I think a good example is I was a ballerina for 14 years. And the first things that started bothering me was consistent knee pain. And we found out I was just getting bone bruises. There wasn't enough support in my knees. So I was just getting these terrible, like swollen purple knees. And there was no explanation to it. And so eventually, you know, I had to stop dancing. And then I realized I was dislocating or I was not aware of my body in space. I was falling more, more clumsy, having more head pain. I realized I could heard my ligaments, you know, I could go 360 and that's not normal. I would have to pop my hip out in order to do a split, you know, and, um, it took a really long time to get diagnosed because there's not a genetic testing obviously for hypermobility EDS. So it's solely based off of symptoms and they can do a physical on you, but I don't think since everybody's so different that that's a great way to go about it, but... with all the things that I was dealing with and my family history of EDS, it made sense, but it took a really long time to confirm that diagnosis because doctors just don't wanna diagnose you even though, you know, you're showing symptoms of something or they wanna wait until it's pretty bad. Formerly I was diagnosed at 15.
[Musical Interlude]
MOLLY 15:18
Why do you think it took so long to get a diagnosis?
ALYSSA 15:22
With EDS especially since it's not, like I said, very well known and studied very well. There's a lot of skepticism with invisible illnesses. They don't want to deal with it or they don't know how to deal with it. And I think it's also a lack of just like education. And when something doesn't make sense to them or you can't physically see it, it's hard to pinpoint. That's the experience and I don't think it's unique to me. I think, you know, it took a long time for my mom to get diagnosed, like, she was having symptoms in her 20s.
- INTERSECTION OF AGE AND DISABILITY -
MOLLY 15:55
Do you think age plays a role?
ALYSSA 15:57
I think it definitely can. I think when you're growing and going through puberty and things like that in adolescence, people want to blame it on all these other things, you know, like hormones or growth spurts. It's, you're just having, you know, growing pains. But in all actuality, that's not growing pains. It's way more than that. It... it hurts way more than that. It's hard to communicate at such a young age how you feel and what's going on with you when you're not given support to help navigate that. You haven't learned how to navigate that yet. And so being able to vocalize and stand up for how you feel, even when a doctor's fighting with you, saying they don't see that on a scan, is so important. And that's something that I've tried to be better about. because I've had so many doctors invalidate me.
- DISCRIMINATION IN PATIENT-DOCTOR RELATIONSHIPS -
MOLLY 16:46
So, that leads me to the patient-doctor relationship, which I definitely want to touch on, cause that's a huge part of chronic illness. How have your relationships with your healthcare providers been, and have you generally felt supported in clinical encounters?
ALYSSA 17:04
For the most part, I have not felt supported. It's because There's not a lot of education, there's not a lot of understanding. And, obviously, this talk is personal and, you know, I suffer from an eating disorder and a lot of doctors that I have seen like to blame that on the fact that I'm not, you know, eating enough when I'm where I need to be or it's something else that has nothing to do with EDS. It's it's always something else.
MOLLY 17:38
Like, it's more about... mental health?
ALYSSA 17:40
Mental health, absolutely. And I had a conversation the other day with my parents and I was like, I need more support. I need more navigation on how to figure out how to live with this. And their first question was, what medication are you on? How many meds are you on? You know, like, it has nothing to do with that.
MOLLY 18:02
You mentioned feeling invalidated by healthcare providers. What words are used or what narratives are used that make you feel invalidated?
ALYSSA 18:13
Words like, we can't physically see anything wrong or words of like, we don't know how to help you because we don't know, we don't know enough about EDS in order to help you. I guess just like being ignored or not listened to, you know, when you're literally sitting there telling them, My shoulder is dislocating every day. Like, what do I do? How can you help me with this? And they still don't, they're too scared. They're too scared or they're confused or they just don't wanna help you because it's too complicated for them. That also makes you feel like an enigma. I genuinely, from experiences with friends, family - even when I open up to them about my chronic illness, something that I don't do a lot because it's so misunderstood, I still feel judged. I still feel like they don't believe me. I feel like I'm crying wolf or something, you know? It makes me feel even more gaslit and confused and it causes my mental health to decline. It makes me question everything about myself and even if I'm actually feeling pain. Which, I know I am. It's a day-to-day thing. But the fact of the matter that you have to think about that and you have to question that, wait, actually am I in pain? Like, that's crazy. That's insane that people will literally, like, I don't know if I'm allowed to curse in this... manipulate you into thinking that you're crazy or mentally unstable.
- CHRONIC ILLNESS, DISABILITY, AND SELF-PERCEPTION -
MOLLY 19:47
We're gonna jump ahead because you touched on self-perception. Can you identify any recurring thoughts or feelings that have come up about chronic illness and/or disability and your self-perception since living with a chronic illness?
ALYSSA 20:02
I think one of the biggest things that I think about a lot is: Am I able to have secure and happy relationships with people? Will I be able to support the people around me and support myself? Am I able to have a full-time job? It's also hard to not consistently think about having a chronic illness and how upsetting that can be and kind of like dwelling on that. consistently and being depressed or feeling like you're not good enough or no one will want you, you know? And I think that, obviously, that's not true, but I think it's your brain and society and everyone around you making you feel that way. And so it's hard to combat those feelings all the time and those self-comments, you know?
- INTERSECTION OF GENDER AND DISABILITY -
MOLLY 20:56
Do you think gender intersects with disability? In the role of being a partner, or just in general?
ALYSSA 21:07
I think, absolutely. I think growing up in the South, as you all know, there's expectations for a woman, you know? Expectations of... I know people that have been married at 20, having kids at 25, and being able to be a mother and take care of children... being able to take my kids to soccer and do all this and like make sure they do after-school activities and keep up with everything. I think that's an unrealistic expectation, especially for women, because we were taught to take care of everybody else but ourselves. And that is like a deep-rooted misogynistic ideal that, you know, like I said - growing up in the South, that's what it's like. Not being able to know if I'm going to be able to have kids... I think that it's a heavyweight. But I also have to remember, like, being a woman isn't about popping out children, submitting to a husband, you know? It's about being an advocate, being supportive, listening, understanding, helping out other women that have chronic illnesses. I mean, not even just have chronic illnesses, just women in general. And I think especially with women in our history, like if they even complained about something they're seen as crazy. I think the misconception is a lot that if I'm having emotional outbursts, it has nothing to do with my chronic illness. It has everything to do because I'm a woman and I have hormones. That's the narrative!
MOLLY 22:36
It's not because you're in pain.
ALYSSA 22:37
It's not because I'm in pain at all because why would I be in pain?
MOLLY 22:41
So that brings up a good question talking about gender. Do you feel like this impacts your experience in clinical encounters - being a woman and what other intersections of identity impact your patient experience?
ALYSSA 22:53
I'm not taken seriously because I'm 'hormonal' or if I have emotional outbursts, I'm 'mentally unstable.' And for a man, getting help is easy. I mean, they don't wanna go see a doctor... Men hate doctors, but they are taken seriously at the doctors and the fact that EDS is more common in women than men. And the fact that it's not researched enough, I think that's very telling.
MOLLY 23:16
Going off that point, in clinical encounters, do you feel that you engage in any activities or invest any specific effort to be perceived as a 'credible' or 'believable' patient?
ALYSSA 23:28
I will say with my history of mental health - when you're put on medication at a young age or have been diagnosed with some sort of mental ailment - the automatic response to any other pain you're having that doesn't have to do with your mental state is because you're mentally unwell.
MOLLY 23:48
When you're going into the doctor, if you feel like they're going to invalidate your pain because of your mental state, do you feel like you have to engage or prepare beforehand to appear mentally well, or to show that this is really about physical illness and that you need help for the physical illness at this particular point in your care?
ALYSSA 24:09
I mean, yeah, I will go in with a speech ready. You know, I'll go in guns a blazing, right? You know, and I think I can explain it real well. I think I'm very, you know, I get to the point. But for some reason, it always ends up being because I have a history of mental illness that I could be still 'lying' about my pain.
- PATIENT HEALTHCARE EXPECTATIONS AND PREPARATIONS -
MOLLY 24:31
How do you prepare mentally or physically for a doctor's visit? In particular, when you have unexplained pain or symptoms such as like when you're searching for a diagnosis or furthering a diagnosis...
ALYSSA 24:44
I go in with the lowest expectations as possible and that sounds terrible. But for me, that helps when I go into a situation where I'm being invalidated because I know myself and my truth. And yes, it's really hard to sit there and have someone tell you what you're feeling is not real and absolutely have cried in front of many doctors. Absolutely have cried. I'm an emotional person, yes, but you have to learn and it sucks that you have to learn this, but to really fight, to really fight and vocalize how you feel and not to give up and it can be so exhausting, so exhausting.
- REJECTING INSTITUTIONALIZED INVALIDATION -
MOLLY 25:26
When you are being invalidated and you're rejecting that, what does that look like? What body language are you using? What language? Are you expressing all of your knowledge about your experience? Are you holding some back? How do you engage in conversation with the physician?
ALYSSA 25:42
I think I have to put on my big girl pants and sound as professional as I can in order to be taken seriously. And sometimes I even, if, you know, my mother is willing, have her also on the phone just to make sure that I'm not being gaslit. And it sucks that you have to have somebody else. in your conversation about your pain in order to not feel invalidated. But that's the real world. And being 22 and still learning how to vocalize and how to exist and how to become an adult, it's really hard to stand up for yourself, especially as a woman, because we're not taught that down south. We're taught to be silent. We're taught to say yes. "Yes, sir." "No, ma'am." I was taught always to say yes and never cause tension. And so, when I'm in these situations where I'm feeling invalidated, I really have to put on my abrasive side. I really have to... Sorry, I have to be that bitch. I have to stand up for myself.
MOLLY 26:42
So you will challenge the doctor's authority.
ALYSSA 26:45
Oh, absolutely. And I may be crying when I'm doing it, but in order to get anywhere with anything, I have to.
MOLLY 26:53
How does the feeling of vigilance and preparation feel? Do you feel like there are any? consequences to that, is it empowering? How does that make you feel having to engage in that beforehand?
ALYSSA 27:05
I would like to say it feels empowering, but I think I feel in the moment defeated, misunderstood... and it's hard to not feel that way when someone is just not listening.
- UNLEARNING ABLEISM AND RELEARNING SUPPORTIVE PRACTICES -
MOLLY 27:18
So I just have a few follow-up questions and then that'll wrap things up. But this is for you to offer advice to your friends and family, how can they better support women and people with chronic illnesses?
ALYSSA 27:34
Wow, I love this question. I think this is so important. I think being willing to understand and look outside of yourself, of your able body, and have a friend that has a chronic illness, and they're like, have to cancel plans, or have to change something, or they're not feeling well, being understanding that it's not. because they don't want to be around you. It's because they're dealing with something bigger. I think finding people who have similar issues, I mean, not necessarily EDS, but go through chronic pain, having a support system of understanding, knowing that you're not alone and knowing that your pain is real. And being uplifted and being heard, being able to talk about it, being listened to. having your parents help you navigate things to their best ability. Obviously, if you're an adult they can't, you know, make appointments for you, but... having a support system is everything. Because if you're doing this alone, you're gonna feel alone. Sometimes you need to be asked, hey, how are you doing? How can I support you? I love you. Just little things like that. And it doesn't have to be like someone taking care of you 24/7. That's not what support necessarily is for me right now. Just knowing I have someone that I can talk to and listen to me and not invalidate me.
MOLLY 29:01
And how can your healthcare providers better support you?
ALYSSA 29:04
Well, I think really listening to me, really listening to my symptoms, trying to understand, trying to find a solution rather than beating around the bush, putting in time and effort and energy. and using your medical knowledge and colleagues and connections to help find providers that would be helpful if you can't support them. Instead of saying, I give up, I can't help you.
MOLLY 29:32
If there's one thing you wish people could understand about chronic illness, what would it be?
ALYSSA 29:50
I think empathy is a big, big thing. I think trying to understand and put yourself in others' shoes, look at things from a different perspective, and appreciate what you have.
MOLLY 29:52
And 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 shoutout to our podcast producer, brin ferguson-nesryn, for this week's episode and for turning our ideas into reality. I want to express my gratitude to Alyssa Nichols, our guest today, who shared her insights on living with chronic illness, your openness and courage to sharing your story have added immense value to this episode and I'm so grateful. And of course, thank you, listeners. Your support means literally everything. 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.
[Musical Outro]