No, I haven’t had any kids but the faces the women make on those TLC shows look about right. National Autoimmune Arthritis Day is this Sunday, May 20th. So I thought I’d annoy you all with tales from the hurt locker. I know that’s combat lingo and I’m legally 4F (at least according to my understanding from It’s a Wonderful Life) but I think it’s appropriate.
When I tell people I have arthritis they don’t understand what that means. Many minds conjure up images of their grandma’s osteoarthritis with swollen fingers or knees worn down from years of usage. Unfortunately, autoimmune arthritis is not your granny’s arthritis.
When I was 16 years old, I was at a six-week math/science summer camp staying in a dorm at a community college not far away from my home. One day, we took a break from classes and went to an amusement park for the entire day. I had a great time walking around the park, riding the rides. Happy from a day of sun and fun I strolled into my dorm room with my five roommates and closed the door. Laughing on my way to put my things on my bed, a spear was suddenly trust down the line of my spine. I screamed and I fell to the floor. I was being sliced in half. “Help me.” The other kids just continued their conversation in full view of me. I pleaded, explaining that I couldn’t move and they all said I was fine. As I clawed and dragged my way to the bed, I wondered why no one was helping me and if this is what it felt like to die. Minutes later, I had made it to the bed and did what has saved me a great amount of pain in my life. I fell asleep.
They pain was on and off. At the end of the camp, my evaluation concluded that I faked illnesses for attention and to get out of work. I argued but it was put in that elusive permanent record anyway. A few months, and just as many doctors later, I was diagnosed with Juvenile Rheumatoid Arthritis and Spondoloarthropathy. My body had decided that the fluid in my joints were a foreign body trying to invade. It attacked those joints with the same force, and as much success, as the Ebola virus. One half of my junior year and three-fourths of my senior year were spent in bed using my super power of sleeping through pain.
As an adult, I lived in remission for ten years. Then, the joy of not noticing my body stopped. When the remission first ended I was desperate to regain my independence and continue working. I tried drug after drug. When I was young the best thing they had was small doses of chemo therapy that I injected once a week. Now, biologics are the rage. Petri dish concoctions made of mice cells and drug companies profit margins. Hours of sitting in a room hooked up to an IV getting an infusion that cost thousands of dollars an ounce. My insurance was paying 10 to 20 thousand dollars a month for those drugs that healed my body but attacked my mind.
For months, I couldn’t read, write, or drive. My mom had to be with me when I took a shower to make sure the dizziness didn’t land me ass up, sucking on the drain. Facing these severe side effects, I became suicidal and was forced to choose between my mind and my body. I chose my mind.
It took me months to accept that I wouldn’t be able to go back to work. During the three years it took for my social security “government safety net” to kick in, I lived off my mom’s retirement fund. After catching my mom crying over finances, I swallowed my shame and embarrassment about accepting food stamps. I loved the freedom to buy food but I hated it as well. My inability to move had contributed to me gaining 80 lbs. I was thrust into the stereotype of a fat young black woman with no job on welfare. I was angry. I had always been a person who changed my situation if I didn’t like it. But I had lost control. Arthritis had taken it away from me. Took me almost four years and countless therapy appointments to accept where I am now.
I write and I sleep. I try not to worry about not having any real arthritis meds to stop my body’s attack. I try not to think of it spreading to my lungs, to my heart, to my eyes, like it has for other people with uncontrolled autoimmune arthritis. I try to be grateful for getting pass the times when I didn’t want to go on. The autoimmune arthritis online community has a couple of people each year that don’t make it through one or the other. We mourn these people we only knew through pain and pray that things will get better for us all.
This is not your grandmother’s arthritis. This is a disease with no cure.
I am 34. My diagnosis is the dual arthritis of Rheumatoid Arthritis and Ankylosing Spondylitis. My dream is screenwriting, and my hope is understanding.
This makes me want to read so much more about your experience with this…