It’s been over a decade since I first became chronically ill. At the time I had no idea that getting sick and never getting better was a possibility. Well, I knew you could get sick and not get better but I assumed you died at the end of that. Chronic illness however is a different beast entirely. I spent the first 3 years or so of my chronic illness journey trying to get all better. I had this drive to find what was wrong and then find a way to fix it. In the end that actually led to more suffering. I did so many medical tests that turned out to be unnecessary. I felt so much anxiety and depression related to my illness. I blamed myself for not finding the right doctors or the right treatments or the right diet. It was an awful way to live.
Eventually I realized that quality of life needed to be my goal. This took a very large degree of acceptance. I had to accept that I was going to continue to be sick, maybe all the time, maybe forever. But once I managed to accept that, I was able to begin to build a life with my chronic illnesses rather than in spite of my chronic illnesses. I see a lot of people in the chronic community talking about their body being the enemy or letting them down. I have certainly had moments when I felt that way, but I don’t think it’s a helpful paradigm overall. My body works extra hard all the time to help me do as much as possible. My body is the closest thing I have to a friend that truly understands what I’m going through. And at the end of the day my body is not a separate entity from me. It’s a false dichotomy.
Eventually, after years of physical and psychological suffering, I accepted that I wasn’t going to get fixed and started prioritizing my quality of life. That meant weighing costs and benefits in new ways. The cost of something that would be minimal to a healthy person might be very high for me. For instance, eating a special dessert wouldn’t be a big deal for many people, but for me with IBS it could mean days of extra discomfort and pain. Conversely, the benefits of things healthy people often take for granted might be huge for me. I learned that getting fresh air and sunshine were incredibly important for me. Many healthy people get those benefits passively in their normal lives but for me I had to prioritize getting outside, even when I didn’t feel good.
Another way I’ve prioritized my quality of life is by avoiding unnecessary medical tests. I used to go to the ER with chest pain multiple times a year. I was always told, “You can’t ignore chest pain.” And I didn’t. As it turned out my chest pain has so far always been caused by my hypermobile rib cage. I decided to stop going to the ER for that several years ago and my life has been better since then. Is there a risk to that? Absolutely. Is it worth it to me in the end? Also absolutely. I don’t spend whole days sitting alone in ERs having doctors disbelieve my symptoms. I don’t get as many giant surprise medical bills. I don’t have to deal with the exhaustion that always comes after a day at the ER. I don’t have unnecessary IVs put in regularly, risking infection. I don’t have extra radiation from getting chest X-rays. I want to be clear that I’m not advocating ignoring chest pain for everyone. I’m just trying to say that everything has costs and for me, the costs of the ER visits were too high for my relative risk. But everyone has to do that calculation for themselves.
Another thing I had to do was decide which of my hobbies I wanted to keep the most. I love both cooking and gardening. By continuing to do both of those things as far as I am able I get fresh air, sunlight, and lots of healthy food. That made it easy to decide those things should make the cut. My husband jokes that I plan my garden every year with the enthusiasm that a 5 year old plans her wedding with. My garden brings me so much joy and peace that I can’t imagine going without it entirely. That being said I have had to scale back my ambitions time and time again. I always want to do more and often I just can’t.
I also took up some new hobbies that were easier on my body. I’ve always liked to read but when I became too sick to work I joined 3 different book clubs and now I consistently read over 50 books a year. I read 9 books last month alone. Reading lets me engage my brain and learn new things. It can also be a wonderful escape from the often tough realities of living in a disabled body.
Other than reading I have taken up cross stitch (though I really only make inappropriate pieces since I find them funny), and I play a lot of board games. Board games have become a really good way to socialize despite my physical limitations. At all but the very worst of times I can manage to play a board game. And for the worst of times we’ve even found some I can play without ever leaving the couch. I also started this blog to give myself an outlet and to encourage writing. I had a friend in grad school and I mentioned to my husband how much I missed writing essays and he told me I had to start a blog. Apparently normal people don’t miss writing essays?
I haven’t got it all figured out yet and I’m constantly making adjustments but my life has improved drastically since I started trying to build a life with my chronic illnesses. I still strive to be the healthiest version of myself I can be, but I don’t have any illusions that I’m going to be totally healed anytime soon, probably not ever. My life is always going to have some differences from my peers but I think a diversity of experiences is good for a community so I try to embrace my unique circumstances.
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