The art of accepting illness into your identity, without it consuming who you are.
Possibly the hardest part of being chronically ill, for me, is navigating how much to think about how I feel.
The philosophy I was surrounded by as a kid was that if you can just stop focusing on it, it’ll go away. While there is some truth to this, a lot of my symptoms were ignored for years as I tried to simply will them away. And have you ever heard someone challenge you to not think about zebras? As prophetic as the choice of animal was, the point is that avoiding something eventually magnifies it in your subconscious. Even worse, I felt this weird guilt over how I felt, that somehow I was just doing it wrong, thinking about it too much, and that if I could just be strong and think about other things hard enough, I would feel better. In other words, it was my fault that I felt so awful. Added to this was the realization that people around me, who I deeply cared about, were also negatively impacted by how I felt.
I was effectively causing both myself and loved ones pain.
In the last few years, I’ve come to terms with what’s really happening inside my body and now understand that I can’t just will it away, but must face it head on. I dove head-first into a philosophy (encouraged by my therapist) that in order to reverse the damage I’d done, I needed to soak it in, to really feel every part of my body and name it for what it was. This was a glorious departure from my previous trend. It was not only liberating, but also led to some important discoveries. For example, I often have intense pain in my joints. When trying to ignore my pain, it all felt vaguely the same. Once I shifted my focus inward, however, I teased out that some joint pain was due to my joint laxity (typically from using my body in a way that it can’t handle), some pain was because of subluxed joints, and yet other joint pain was due to widespread inflammation. It may seem like these nuanced differences don’t matter, but the treatment is vastly different -- the first pain, from injury, requires rest and/or ibuprofen to feel better. Subluxed joints, on the other hand, won’t feel better until they are popped back into place, which sometimes requires vigorous exercises or a visit to my PT. The widespread inflammation is usually caused by mast cell reactions, and so the best cure is to eat well and to find a nice dark, cool, quiet place to rest by myself.
This newfound philosophy was great, and also helped me to own that my life will forever be altered by my diseases. It drove me to really get over it and move on. I released my shame, my need to keep my symptoms to myself, and learned to be assertive to get what I needed for discomfort/pain management in each moment.
I had not found a perfect world, however, and immediately felt the effects of this shift. The first consequence was in my relationships.
The problem with feeling the freedom to voice what I felt in each moment was that I was constantly voicing discomfort.
It wasn’t as if I felt good most of the time and occasionally mentioned something being off -- it was a constant onslaught of pain, cramps, dizziness… read my origin story for the full picture. The people around me couldn’t stand the steady flow of illness. While I was still riding my high of discovery and openness, everyone else was just brought down by the negativity they assumed I was feeling. I had to constantly explain to people why I was not going to apologize for being honest about the myriad symptoms I had always felt.
Eventually, I realized it was going to bring me down, and I was likely going to be the person no one wanted to hang out with.
There was also a more intrapersonal battle. I needed to own who I was -- all of it.
The good, the bad, and the sickly. I needed to know deep in my bones that I am chronically ill before I could accept myself for it. But there’s a fine line between accepting illness as part of your identity and letting it become your entire identity. I was becoming the sick one, the one who talked about their health in every single conversation. It enveloped me. I don’t actually regret any of this. It was like coming out of a closet and needing to flaunt it until I (and my community) could really accept it. Some people may not need this step, but as someone with years of built-up shame, I needed it. I am now, however, in a state of needing to figure out that balancing act; I need to still own who I am and not shy away from talking about it.
But, I need to also talk about other things, to return to the other vibrant layers of who I am, and let them develop again.
This is harder than you’d think, when you have to do physical therapy for an hour every day, see doctors just about every month (and fight with insurance after each visit), and every single meal is a challenge (more on that later). My daily routine is so completely riddled with the self-care needed to stay somewhat healthy, it's hard to have time for anything else. The self-awareness, though, has been critical for me in determining when to focus on my body, when to be open about my experience, and when to turn outward in nurturing relationships and passions that aren’t steeped in illness.
I have no doubt that this will be a lifelong balancing act, and that some days will be better than others, but there is comfort in knowing that it doesn’t need to be one or the other; I can own who I am and share that experience without shame, while also using the beauty of others and life to distract me from the most challenging aspects of who I am.