I was 18 the first time I knew something was wrong. I burned my hand with a cigarette, but the burn wouldn’t heal. Weeks went by and I tried bandanges and ointments and lotions and lathers. I wore gloves and started barely washing my hands to avoid irritating the wound. But it grew and spread.
Red, scaly, itchy. Sometimes there was puss or clear fluid leaking. Then the spots started appearing in other places. My other hand. The bottoms of my feet. I knew it wasn’t a burn, but I avoided it. My mom made me go to the doctor. It was psoriasis, and dishydrotic eczema, and I was prescribed steroid creams and ointments and Prednisone and even a UV light treatment that at the time, in the late 90’s, was considered cutting edge.
My then boyfriend, now husband, would help me into bed, remembering to put ointment and socks on my feet, knowing if I didn’t do it I probably wouldn’t be able to walk the next day. I tried to hide it, but I couldn’t hide it. Some days it was all I could think about. My life revolved around finding a way to make my skin better.
Then, when I was 20, living in Boulder, just barely managing my skin condition and seeing doctor after doctor, I started developing pain and sensitivity to light in my right eye. I ignored it, focusing on school and finals, and eventually it became unbearable. I drove home unsteadily, swerving down I-25, for the break between semesters, one eye closed the whole time.
By the time I got to my parent’s house I was in exruciating pain. I barricaded myself in my mom’s bedroom in total darkness, convinced I was going to have to have an eye transplant. I couldn’t see. I couldn’t move my eyes. Light felt like a dagger directly to the cornea.
I had Iritis, or inflammation of my iris. It began recurring almost yearly around the holidays, triggered by stress and who knows what else. I endured more tests.
My opthamologist tested me for the gene expressions HLA-B27. Positive. What did it mean? No one could really say. Just use this steroid drop, and this pressure drop, and it’ll get better. Just manage it. I became a pro. I moved from doctor to doctor, but I knew what they were all going to say before they even said it. It was always the same.
I managed my skin, and my eyes. In my mid 20’s, I started noticing my toes were swollen and painful. Then my fingers. I’ve always had funny looking hands — double jointed fingers that can do things most fingers can’t. But this was different. This was a new kind of pain. Debilitating, some days I couldn’t use my right index finger at all. I couldn’t open jars, or grab the dumbells tightly at the gym. I ached and cried. I joked that I had the hands of an old woman. But it wasn’t a joke, really.
I was diagnosed with psoriatic arthritis at 26. I was about to get married, I was young, my whole life ahead of me, but I was researching biologic medications and sitting in my rheumatologist’s waiting room for 2 hours at a time because I didn’t have the confidence to tell him to fuck off and find another doctor who would take the time to really listen to my needs. I was miserable. And I was risking permanent joint damage if I didn’t take the drugs they recommended.
So I took them. For the last 12 years I’ve been taking them. I’ve been on 5 different injectable medications, one monthly infusion, steroids, and countless other drugs. I suffered from near liver failure from one of these drugs, the remedy for which was taking an immunosuppressant usually reserved for organ transplant recipients. One drug works for a while, then it stops. And so I go to the next one.
I’ve had to have cataract surgery due to long -term steroid use, I now joke about my bionic eye. I’ve been on Zoloft because the steriods made me angry and mean and depressed. I’ve cringed at my moon face in the mirror and screamed at the scale when it keeps going up even though I’m throwing everything I have into making it go down. I’ve laid in my bed and cried my eyes out because every single bone in my body aches more times than I can count. I’ve tinkered with my diet nonstop in an effort to find something, anything, that will help reduce the inflammation in my body. I’ve screwed up some pretty major friendships. I’ve spent thousands of dollars.
I’ve become obsessed with myself. With fixing myself.
I’m so informed about what is wrong with me. Yet I understand absolutely nothing about what is wrong with me. And neither it seems, does anybody else.
I’ve gone off all the drugs twice, to give birth to two amazing little girls. I’ve also reluctantly gone back on them as my joints slowly deteriorate, my skin worsens, my eye aches and throbs. I’ve convinced myself I don’t need the drugs. That I can do it without them. Then my body convinces me otherwise.
Late last year I started getting sick in a new way. A lot. I couldn’t eat. And when I could, I couldn’t digest my food properly. I have fevers on an almost nightly basis. All the muscles in my body seize up, and I shiver and lay in bed, unable to move. It’s humiliating, being sick, when it’s Christmas and your daughters want you to play with all of their new toys, and when it’s your birthday and your friends just want to take you out to celebrate. And it’s hard to explain, when in the morning you feel okay, and begin to go through the motions of your day, but by late afternoon all you want to do is go lay down. Like an old woman again. But only 38.
Last week I was diagnosed with yet another autoimmune disease: microscopic colitis. Not ulcerative colitis or Crohns, but with similar symptoms. The path to recovery? More steroids, or maybe another biologic, some immunosuppressive drugs, cut out gluten, dairy, eggs, soy, all spices, all raw vegetables and fruits, eat nothing but rice and chicken and try not to murder everyone that talks to me.
I don’t know yet, exactly how I’ll treat this illness. I know that I have a lot of work to do if I want to feel better. I know it’s not going to be easy, and there are going to be a lot of people around me who tell me the choices I make aren’t the right ones. I know that I’ll probably continue to be a shitty friend and a shitty mom and a shitty writer while the lion’s share of my energy goes toward fighting this thing.
I know one thing for sure, there are a lot of other people out there fighting autoimmune disease and chronic illness. And there are a lot of people doing research on how we can combat these diseases. It feels lonely sometimes, living like this. But I know I’m not alone.