Accepting My Illness
When I was diagnosed with my first illness, I fought against it fully convinced that if I worked hard enough, I could get better. This illness would be just a temporary “blip” in my past eventually, I thought. I was angry, bitter, and hyper-focused on every symptom. I’d analyze each one and track them to try and figure out what was wrong, with the intent of discovering a new treatment I could try to bring me closer to healing. This period was filled with terrifying uncertainty, turmoil, and desperation for validation. I felt stuck and also behind at the same time because I wouldn’t do things or start projects because I was waiting until I “got better” first.
When it was becoming clear that “chronic” really, truly meant chronic, I began to realize how detrimental my mindset had been. It fostered anguish, false hope, lofty expectations, and caused a whole lot of heartbreak and disappointment when I couldn’t reach those expectations. I also realized that waiting until I got better to get involved in things wasn’t a life that I wanted to live, because it wasn’t really living.
I was trapped in that negative headspace for so long because I used to think that if I accepted my illness, that meant that I was giving up. With time, I’ve learned that couldn’t be further from the truth. You can accept where you are, give yourself grace for your limitations, and also work towards improving your stability and functioning simultaneously. They’re not mutually exclusive.
In the wise words of Megan O’Rourke:
The chronically ill patient has to hold in mind two contradictory modes: insistence on the reality of her disease, and resistance to her own catastrophic fears.
Now, I didn’t just wake up one day and suddenly accept everything as it was. Acceptance is more of a spectrum. There are days where I’m completely okay with how things are right now, and others where I just want to cry because I feel like I can’t take it anymore, and that’s okay! I’m not sure that I’ll ever get to a place where I don’t have those days where I’m just frustrated with everything sometimes, but the goal is to have them less often.
Overall, I do accept my conditions and I’ve stopped waiting until I get better to do things. I’ve stopped catering to the unknowns, and cater towards what I do know instead. I’m not trying to fight anything, I’m trying to carve out the best life I can for myself with what I’ve got in this very moment.
All we have is now, so why not cherish it?
This mindset has truly set me free. Consciously focusing on each symptom all the time is exhausting and often (with exceptions of course) pointless. My life isn’t entirely about my illness, it’s just something that I have to manage. I’ve found myself happier, more content, and overall better off not spending so much of my limited energy focusing on what’s wrong. I manage what I need to, and otherwise go about my day in any way that I can.
On the left, I’m modeling for a campaign that was picked up by Teen Vogue as well as Forbes, and on the right, I’m on a bridge in the rain forest in Costa Rica! I never would’ve had those experiences if I remained too afraid to live :)
