how I feel about my chronically ill body

body dysmorphia in a body that constantly betrays you

I’m about to be so real with you right now. Get ready for a very vulnerable post.

Lately, I have had a lot of negative feelings towards my body, which has really affected my mental health.

They say comparison is the thief of joy, and it seems like we are entering the season of comparing every part of ourselves with others, usually on social media. I think this is especially a problem for women, in my opinion. My entire “for you” page on Instagram is filled with diet posts about “getting ready for summer” and “tips for the perfect summer body” or “5 habits to stay skinny.” Women are feeling the pressure to get in shape for the warmer season ahead, and the comparison is almost impossible to escape.

Being chronically ill, I’ve never had a relationship with my body that involved trust and confidence. I always knew that at any moment, my body could ruin my plans, make my life miserable, take away whatever I was looking forward to. Whats more, my body is also covered with large scars that were not my choice, adding another layer of dysmorphia.

Last year, I had the best relationship with my body maybe ever. Around March of 2024, I decided I wanted to feel strong, so I started going to the gym for the first time since 2020. I’ve never really been a fitness girly, but I have had seasons of my life where I was living in my fit-girl-era. Having a gym in our apartment complex, it was literally free to get myself into shape, and I finally had some free time on my hands to do so.

I didn’t do anything crazy—I started with 3x per week, for only 30 mins at a time, and no pressure on myself if I couldn’t get to it that day. Slowly but surely, it became part of my weekly routine, and I even looked forward to my gym time, and it became a therapeutic outlet for me.

By the next month, I was already feeling stronger. By May, I was looking and feeling more toned, and people were noticing. I was very pleased with the results I was seeing, finally feeling the confidence I had craved so much. More than that, I was proud of myself for sticking to it and being so disciplined. However, I had lost a little bit of weight in the process (which wasn’t necessarily intentional), and a couple people in my life commented that I looked sick, which was obviously very discouraging considering that I was finally feeling good about my body for the first time in a while.

For the first time in my life that I could remember, I was actually feeling confident about my body, and even bought a string bikini for the summer. I literally couldn’t remember ever feeling as good about myself as I did during May-October of that year—I truly felt comfortable in my own skin, like I was finally healing my relationship with my body.

But then, in October, I had to have surgery to diagnose endometriosis. If you read my Substacks from around this time, you know that this surgery didn’t exactly go as planned, and I ended up having multiple complications for weeks afterward.

I felt so defeated. I thought I would be able to get right back to the gym after surgery, but with all the complications, it was harder to get back into it, and I was losing my progress. I told myself that I would get back on track—I had been doing so good for months, surely I could get back to it just as easily.

However, this was not the case. After surgery came the inevitable end-of-the-semester rush, and most of my limited energy went to school obligations. As it got colder into the winter, I was scarcely in the mood to put on leggings and walk to the gym in the cold (I know, first-world problems).

It didn’t help that shortly after my surgery, the IUD that my gynecologist had surgically placed was once again dislodged, due to my constantly shifting pelvic organs. This had been the last shot with an IUD, as it was now evident that they weren’t compatible with my complex anatomy. Instead, I was given a gigantic vaginal ring called Annovera, and started it in November.

I didn’t really notice it until we got back from Mexico at the beginning of the year, but this birth control made me feel… different. It was changing my body. I had gained a few pounds around the holidays, as most people do, but it wasn’t easily coming off like I had expected it would once I started exercising again. In fact, it kept going up.

I also noticed that I was certainly hungrier on this birth control. Appetite has always been a struggle for me, what with multiple factors suppressing it all the time, including my ADHD medication which caused me to have to force myself to eat. But suddenly, on this new birth control, I found myself famished during the day, an entirely new experience for me.

Okay, I’m about to be really vulnerable right now, and talk about weight. By March, I discovered that I had gained about 15 pounds on this birth control. I was mortified, feeling like my progress had been erased. Although I was still exercising weekly, it had gone down to only once or twice a week, with school and life getting busier and busier, leaving me less time and energy to work on myself.

I’m going to be transparent with you: when I was 14, I had an eating disorder. I’ve never really talked about it before because it was so long ago, and didn’t last for years and years like many people do. At one of my regular GI doctor appointments, my pediatric GI looked at me and said, “you’re not skinny anymore.” I was 13 years old. That really broke me, and, naturally, I tried to make myself skinny again.

Maybe someday I’ll do an entire Substack about that time in my life, and go more in-depth about my eating disorder (if that is wanted), but I mention it now because that 13-14 year old girl still lives inside me, and comes out every time I start to feel bad about my body or my weight. No matter how hard I try to silence her, she always creeps back in.

The sudden and unexpected weight gain has left me feeling incredibly insecure about my body, especially during a time where everyone is scrutinizing themselves against each other. I missed the body I had last summer that I worked so hard for, and longed to get it back. Transparently, I’m getting married in less than two months, and this is not the weight I wanted to be at. I wish I could get married in the body I had last year instead, feeling confident in my own skin.

I’m trying to make the pounds disappear through my visits to the gym and slightly tweaking my diet, but I’ve unfortunately just been maintaining rather than losing. And of course the “you look healthier” comments are no help either, triggering my 14-year old’s negative thoughts.

I tried to make myself feel better by buying a new bikini for the season, as I do every year. I saw my absolute favorite ostomy influencer (Mollie from Traitors UK) wearing the cutest string bikini with her black bag looking absolutely amazing, so naturally I bought the same one. It was very much giving “let me buy the same shampoo as her so my hair will look the same.”

Of course, we did not look the same. Instead of giving me confidence, I felt even more uncomfortable, with my body now on display. My plan had been to take pictures by the pool and feel better about myself, but the whole time, I couldn’t stop thinking about how insecure I felt, how I would never look like Mollie.

Part of my dysmorphia is also comparing myself to other ostomates in the community. While they have their bags higher up on their waist, with tiny laparoscopic scars that are barely visible, my ostomy is low, accompanied by multiple large scars that bisect my stomach. In other words, they just look “cuter,” if that makes sense. Its about the aesthetic, of course.

With summer quickly approaching, I am desperate to get back my body from last year. At the same time, I know that in the grand scheme of life, this does not actually matter. I know deep down inside that when I look back on my life someday, I’ll regret all the time I spent feeling disdain towards my body and wishing I could change it. I know that some people would love to have the figure I do right now. But somehow, I just can’t get out of my head the feeling I felt when my body was finally the way I wanted. I’m just chasing that feeling of confidence I had last year.

Until then, I’m just going to do what I always do: fake it until I make it. Appear confident even though I’m really not, take pictures until I like what I see, and try to stop comparing myself to every other ostomate (or woman) I see. Although this is something that has been at the forefront of my mind these last few weeks, there are much more important things to spend my time and energy on. I’m still exercising and focusing on eating more protein and less sugar, but I’m also living in the moment and enjoying life without much restriction, as I like to live it. I’m still learning to be comfortable in my own skin—especially in a body that constantly betrays me—and I’m healing my relationship with my body gradually, just like life: one day at a time.