Sick

Thoughts on Coming to Terms with Chronic Illness

In January I was diagnosed with rheumatoid arthritis, and in the intervening eight months it has proceeded to kick my ass in every possible way, upending what I thought about myself and how I define disability. As warped as this sounds, I always prided myself that my disability was not the result of an autoimmune disorder. Finding out I had Ehlers-Danlos after almost 20 years of groping in the dark for a cause to my strange neurological and orthopedic symptoms was a huge relief. I finally had a name for all of what I had been experiencing, and I was also relieved that it wasn’t something like multiple sclerosis, which several doctors had speculated might be the cause of my neurological problems. The idea that my body could be attacking itself, which is essentially what happens in an autoimmune condition, was abhorrent to me. It made me feel like I could be doing this to myself, albeit unconsciously. EDS is a genetic disorder, which means I was born this way, and I could expect a somewhat stable experience of it (though I’ve come to learn it’s not as simple as this). I could comfort myself with the idea that this disability is just part of who I am, how I was made. I could accept it and adapt my life to it and move on. It wasn’t like I was one of those autoimmune people who would continue to get worse because of their traitorous body.

After a good six months of joint pain that slowly made holding things and walking long distances incredibly painful, I found out that I am in fact one of those people, the failures whose bodies have betrayed them by going and attacking perfectly healthy tissue. This sounds overly dramatic, but this was honestly my first reaction. I have always felt like my body was a friend to me, even though it didn’t move in the same way as other people’s bodies. We were on the same side, adapting and overcoming, and then my body had to go and start sabotaging itself and our great relationship.

It only got worse when I started RA drugs and learned a whole new meaning of the word sick. I felt horrible for those first few months. I had terrible side effects—migraines, POTS and mouth sores that made it impossible to eat anything but smoothies. I continually broke plans with friends and backed out of volunteer and work commitments. It took all my strength just to get through the day and manage whatever terrible thing was happening at the time. I never wanted to be one of those chronically ill people who can’t do anything or go anywhere. I was happy that my only disability was with my spastic muscles because I could still live my life and go wherever I wanted in a wheelchair or with crutches. But wishing something was different never actually makes it go away. It only made me more frustrated.

Things are going better now, though there are still serious setbacks. After eight months of medicine I can now move my wrist in all directions and it no longer looks like a swollen peach. My foot mostly allows me to walk as far as I want in a day, and my knuckles haven’t been painful for months. I’m back to getting my nourishment from smoothies and soup this week after a reaction to a new RA drug left me with a mouth full of sores and peeling skin. But I now know from experience this too will pass. And I have figured out how to make an excellent and filling smoothie. Mostly I have had to learn how to be friends with my body again, and not to take this autoimmune condition as a personal insult. A whole host of illnesses start with our own bodies, and autoimmune conditions are as much the result of environmental and genetic factors than more amorphous things like stress and trauma or not getting eight hours of sleep a night.

I’m still working on it, but I no longer blame my body for betraying me. I have also learned the importance to moving slowly, of saying ‘no’ to things and of listening to what my body feels capable of doing on any given day. We are just trying to muddle through it together, figuring out what works to calm down the crazy levels of inflammation and how to thrive in the midst of an unknown future.