In this episode, I explore the relationship between chronic illness and body image, particularly how living in a body that doesn’t look or feel the way one wants can impact self-perception. We’ll discuss:

• The Psychological Toll of Chronic Illness on Body Image
• My Personal Experience Covering Up vs. Living Freely
• The Struggle with Self-Acceptance (It’s Real)
• And More

Rare Disease and Body Image – Eps. 5 – The Fine, But Not Fine Podcast

In this episode of Fine, But Not Fine, I’m diving into the complicated relationship between body image and chronic illness, sharing my experience living with Mycosis Fungoides, a rare form of Cutaneous T-Cell Lymphoma. I talk about the emotional toll of having a visible condition, the moment I decided to stop hiding my skin, and the ongoing struggle between acceptance and self-love. I also share how exercise has helped both my health and mindset, the importance of finding supportive spaces, and why we need to have more open conversations about cancer and chronic illness.

Transcript Ep. 5

You look fine, but you’re not fine, and that’s exactly what we’re here to talk about. Welcome to Fine, But Not Fine, the podcast about navigating rare disease, healthcare battles, and the messy reality of chronic illness. I’m Kelly Paul, and I’ve been living with Mycosis Fungoide since 2015 This is a space for real talk, real experiences and practical advice, because surviving is one thing, but figuring out how to actually live, that’s the hard part.

Welcome back to Fine, But Not Fine. Today, we’re diving into something deeply personal, body image and chronic illness, more specifically, how to live in a body that doesn’t look or feel the way you want it to.

The Impact of Body Image and Rare Disease

Living with a chronic illness doesn’t just affect physical health, it profoundly impacts one’s body image and self perception. Research indicates that individuals with visible symptoms from chronic conditions often experience heightened body image concerns, and this is particularly true for diseases that manifest physically, such as skin related conditions that I have.

Now, a study highlighted in Psychology Today emphasizes that chronic illness can shape body image and identity, especially when the illness leads to visible changes, and the psychological toll of managing a condition that alters one’s appearance can lead to increased self consciousness and anxiety.

Now, specifically focusing on Mycosis, Fungoides, what I have, the Cutaneous Lymphoma Foundation notes that this condition can be present for years or even decades before being accurately diagnosed because it often mimics other skin issues like eczema or psoriasis. And this prolonged uncertainty can exacerbate feelings of frustration and negatively impact one’s self image. Understanding these challenges is crucial by acknowledging the profound impact chronic illnesses have on body image, healthcare providers, support networks and us as individuals, we can work together to develop strategies that address both the physical and emotional aspects of these conditions.

Mycosis Fungoides is a Visible Disease

Now for me, my body image is impacted by Mycosis Fungoides, a form of Cutaneous T-Cell Lymphoma. It’s rare, but in my case, it shows up on my skin, and I have red inflamed and sometimes scabbed over patches that might weep. Sometimes they bleed because they’re very itchy, and I scratch them. And to put it pretty bluntly, they really don’t look very nice. They look pretty awful sometimes. And for a long time, I did what I think a lot of people with visible skin conditions do I covered up long pants, long sleeves, cardigans, even in the middle of miserable, humid southern summers. I felt like my skin made me look gross, and I wasn’t willing to let other people see it.

When I Stopped Hiding Mycosis Fungoides Patches on My Skin

But one day, I actually hit a breaking point, and I don’t remember exactly when I decided I wasn’t going to let my skin keep me in hiding anymore. Just one day I realized I wasn’t doing it anymore, and I suspect it’s because covering up was impacting my enjoyment of life, and let’s face it, having an incurable disease makes you think about enjoying life.

Now, one of the things I like to do with my husband is go to Virginia International Raceway, VIR and we go to enjoy really cool cars racing around a track. It is a lot of fun. The participants and the attendees are awesome, and the facilities, it’s a country club for race cars. So it’s nice. And most of this happens in the summer, the hot, humid southern summer.

Y’all wearing a cardigan outdoors in the southern summer heat, it’s exhausting and it makes me miserable. I mean miserable. It sucks the fun out, and somewhere along the way, I just decided I wasn’t going to do that anymore. Why was I making myself even more uncomfortable than I already was? Just because I was afraid of other people’s reactions. So, here I am, no more long sleeves, no more suffocating layers, at least in summer, when it’s cold, that’s a whole other thing. But honestly, if someone has a problem with my skin, that is their problem, not mine.

But here’s the thing, just because I stopped covering up doesn’t mean I suddenly loved what I saw. Even now, when I look at my arms and legs, I think about what they used to look like. I remember smooth skin, no patches, no scabs, no bleeding, and yeah, I miss that. I wish my skin still looked like that. And I don’t say that because I’m fishing for sympathy. I’m long past that. It’s just the reality of living with something like this. You can accept it without loving it, and that’s where I’ve landed.

Making Peace with a Visible Rare and Chronic Disease

I’ve made peace with the fact that this is what my skin is now. But peace is not the same thing as loving it. And there are the icky moments, you know, and there are also the moments that remind me that even when I forget about my skin, my skin does not forget about me. Like when I mindlessly scratch one of those patches or plaques on my body, and a few minutes later, and I realize I look somewhere or someone has said something, and I have bled through my shirt or my pants. And there is nothing quite like the look of concern —I’m being polite here — on someone’s face when they realize you’re bleeding and don’t seem to care. But the truth is, after years of this, I just don’t always care. It’s part of life now.

The Impact of Exercise on My Rare Disease Experience

One place where this struggle really shows up is at the gym. Now, I go to the gym for a couple of reasons, and none of them have to do with esthetics. I lost two people very close to me much too soon from cardiac disease, and honestly, that scared the hell out of me, and I don’t want to follow the same path. I want to give my body its best shot at longevity, even if it’s not the easiest body to live in. And then, somewhat accidentally, I discovered something kind of cool, and that’s the working out actually makes my treatment side effects less awful.

You know, I get blood work done a lot, one of those fun little perks of having a rare disease. And after I started exercising regularly, the bad numbers in my labs, they started improving, high cholesterol, bad liver function, all those markers that we track dropped, and in double digit percentages. Now, don’t get me wrong, I’d still rather not need monthly blood tests, but I will say this, at least they gave me cold, hard proof that working out was actually helping. But it’s not just the physical part of it.

The gym really is a mental reset for me. I walk in stressed, overwhelmed, frustrated, and when I walk out, I have a different perspective. The things that felt massive before feel smaller. The stress doesn’t sit as heavy. My mind is clearer and my outlook is better because the gym is one of the few places where my body and I aren’t really at war.

That said I do have additional logistics of working out with my skin. Because of my patches, I have to be hyper-aware of infection risks, which means I have to clean every machine before I use it, in addition to afterwards, because I can’t afford to pick up bacteria that could turn it into a skin infection. And now, the gym I go to isn’t your typical gym. It’s not some chain. There’s not loud music. You don’t have people with their cell phones out having conversations or recording their workouts, right?

Using a Hospital Fitness Center

It’s, it’s actually a fitness center run by local hospital, and their entire focus is health. And many of the members are there through the Silver Sneakers program, which is a fitness benefit covered by, I think it’s like a Medicare type, Medicare Advantage type insurance. And others are there because they’ve had a cardiac event, and they’re working to regain their strength. Some are going through cancer treatment or living with another chronic illness, and others, you know, are just regular members or hospital employees who want a space that aligns with their values.

To even join, I had to get doctor approval and disclose my medical conditions to the team at the gym so that they would have it in case of a medical emergency. And the people that work there, they’re not just fitness instructors, they’re exercise physiologists and specialists, each with at least a bachelor’s degree in their field, and they help the members there, you know, they’ll take blood pressure, they’ll you know, they’re doing a lot of rehab type of work, and they understand the medical needs that their members have when they’re there to work out.

And part of what makes this place really special is the community. People aren’t just working out in their own little world. They know each other’s names. They introduce themselves to each other, they check on each other, and it’s a space where the goal isn’t necessarily looking a certain way. It’s really about staying alive, staying mobile and staying independent. And for someone like me dealing with a visible condition, it’s a safe space. I don’t have to explain myself. No one gives me weird looks. Everyone understands in some way, what it’s like to be navigating health challenges, or if they do ask questions, it’s really in the interest of education and learning.

The great news is these kinds of facilities exist all over the country. Many started as part of a cardiac rehab programs the hospitals and evolved as hospitals realized the best way to keep people out of the hospital is to help them stay active and engaged.

Illness and How We See Ourselves

Now, when we talk about body image and chronic illness, it’s really easy to focus on just one piece of the puzzle, like for me, my skin, but the reality is, there are so many ways illness and treatment can change how we see ourselves. Like I said, for me, it’s my skin, but for someone else that might be losing their hair because of treatment, some medications cause weight gain or weight loss. Some surgeries leave scars that never fully fade, and some conditions change mobility, making it harder to move the way you once did. And the tough part, none of this is a choice.

You know, if someone shaves their head because they want to, it’s empowering, but when cancer or medication takes that choice away, it’s a different story. Same with weight changes when it’s happening because of a treatment side effect, you don’t get the same just eat this or just workout options that people like to suggest.

And this is why body image in the context of chronic illness is so complex. It’s not about unrealistic beauty standards. It’s about grieving the parts of yourself that don’t look or feel like you anymore. So if you’re listening and struggling with this, you’re not alone, and it’s okay to feel conflicted. You can accept your body without loving it. You can work toward feeling better about yourself while also mourning the way things used to be, what matters most is that you give yourself grace, because living in a body that doesn’t feel like yours is already hard enough without piling on guilt or shame.

Learning to be Open with My Rare and Chronic Illness

Like I’ve mentioned in other podcast episodes, I like to look for the sunny side of things. And one of the biggest pros to all of this is that I’ve learned to be really, really open. If someone asks, What’s that? I don’t get defensive. I don’t try to make them feel bad for noticing. I just explain, oh, that’s a patch of Cutaneous T-Cell Lymphoma, specifically Mycosis Fungoides. It’s a type of blood cancer that shows up on my skin, and it’s not contagious.

And you know what? Most of the time, people appreciate the explanation. They’re just curious. They’re not trying to be rude, and I’d rather educate someone than have them silently staring and wondering. But here’s the thing, we need to stop whispering “cancer.” So many people hear that word and immediately think death. And while yes, that is the terrible reality for many, it is not the reality for all, and we have to be able to talk about it, to normalize it, to make space for the full spectrum of cancer experiences.

Because cancer isn’t just the big, dramatic diagnosis like you see in movies, it’s also this. It’s rashes and blood work and treatment side effects and insurance challenges and pharmacies. It’s adjusting to a body that doesn’t feel like yours anymore. And the more we talk about that, the. Easier it becomes.

So, where does all this leave me? Well, I’m no longer hiding my skin, and that’s a win, and I’ve accepted for today that this is my body, another win, but I don’t love it. I don’t always like it on some days. Yes, I wish I could go back. But you know what? Some days, after more than a decade of this, I just don’t think about it at all. It’s a process, and I’m still in it.

If you’re struggling with your own body image, whether it’s because of a rare disease, a chronic condition, or just the way life has shaped you. You’re not alone, and it’s okay to be in the middle of figuring it out. And if you have any thoughts on this, I’d love to hear them. Thanks for listening, and remember, it’s okay to be fine, but not fine.

Thanks for listening to Fine, But Not Fine. If this episode resonated with you, subscribe so you don’t miss what’s next. And if you’ve got a story question or just need to vent, reach out. I’d love to hear from you until next time, take care and keep on going.