hi, this is av

ava's blog

how illness changed my perception of my body

Content warning for eating disorder mention.

As already mentioned in another post of mine, I was recently diagnosed with Crohn's disease and also subsequently hospitalized during a bad flare of it. This is a progressive disease with no cure so far, and thought to be an autoimmune issue. Fortunately, there are treatment options available that I will be getting to explore soon.

Since then of course, this new info has been a lot to deal with, especially because the progress can be unpredictable. What does it mean for my full-time job? My parttime studies? My hobbies? Will the first treatment work, and for how long, since you can build antibodies and it can lose its effect? When should I consider applying for a disability status? What accommodations are there at my university and workplace, and what paperwork do I need? How do I need to adjust my lifestyle to account for being immunosuppressed for the rest of my life, especially with Covid, other respiratory diseases and future pandemics?

But during all of this, I also see some positive effects - I have more love for myself and my body. I am much more aware of how hard my body works to keep me alive, and how it has fought for years in the background while I still lived a mostly normal life. I am now grateful for every little improvement I see. Looking into the mirror and comparing to how I looked and felt during my lowest point in the hospital versus now makes me see how beautiful I am. I look at the things I used to want to change and now I don't want to change them at all. I am not bothered by my chubby little Prednisone moon face - it is temporary until I switch medication, my skin is clear and glowing, and it's part of what keeps my symptoms in check. When I see it, I am so grateful to have it.

I used to struggle with disordered eating on-and-off since the pandemic due to the loss of control and isolation as well as trying to (unknowingly) keep symptoms of the disease under control. Food was something evil that had a lot of politics, ethics, beauty standards and suffering attached. To me, it made me either fat, miserable, or both. Eating was a chore.

Now I am grateful for whatever I can eat and once the treatment(s) work, I can most likely branch out again and relearn to enjoy food fully again. I am so looking forward to that. Due to how difficult eating was physically the past month or so and the fact that I was already thin, I've discovered something new for the first time: Feeling like I am too skinny, not healthy looking, and wanting to change. I never thought I would feel that way when I used to starve myself down intentionally. Now that I know how fast weight can be dropped when you're sick and how bad that feels, I never want to purposefully restrict food that way again. I am grateful for every little curve and roll and fat on my body. It makes me look beautiful and healthy. It gives me a cushion for when I am in a bad flare and have to change and reduce what I eat to give my body some rest.

I also don't care about a perfectly flat stomach anymore. It can't be all the time! It was perfectly flat when I was just able to have my food via an IV or a liquid diet bottle, how is that glamorous or pretty? If it is inflamed, I don't want to suck in and make it worse, and I don't want to train abs to aggravate it further or push everything inside via tight pants just for a beauty standard. If it isn't inflamed, then there's food in there and I am so grateful that it is there and nourishes me, no matter what that looks like. All I care about in terms of my stomach is whether there is bleeding, a stricture or a blockage, and if there isn't, that's perfect. Not having a flat stomach all the time is very little of a problem to have when the other things to worry about are a resection or a stoma.

I feel like I finally exist unapologetically in my body and appreciate it for things I have taken for granted before. It really puts things into perspective. Yesterday was the first time in a while I was able to leave the house briefly (without counting my MRI appointment) and that was just to take the garbage out and I enjoyed it so much. I've struggled a bit in the past with some agoraphobic tendencies, being uncomfortable with being perceived or approached outside; it made me prefer to go out when it is dark only or otherwise be nervous and walk fast to where ever I needed to be. But right now I don't care about being perceived at all, I don't mind how people see me or how many, I am just grateful to be alive and to experience the warmer weather and I feel confident and pretty no matter how I look or what I wear. :)

#health