This was my third visit to the doctor in two months. I finally had my iron levels up yet I was still exhausted all the time. My immune system was as lethargic as a teenager: I got two colds and two infections during this time. “You’re having twins!” my doctor joked. I was too weary to laugh.
We did routine bloodwork. After two weeks of doing everything she told me to, which was eat healthy, cut caffeine down, and exercise, I was feeling better. And then I got an email with my results and a little note from my doctor: “Please make an appointment as your test indicates a possible autoimmune disease.” In my mind, possible meant absolutely. So on this third visit, I was already anxious. Anxious enough to only take one word from the fifteen minutes she spent talking at me: lupus.
Are you kidding me? Lupus?! The disease that they always think is the problem in House before finding out what the real problem is? I immediately did what I always do, which is get hopped up on internet misinformation. I called my mom who tried to reassure me by saying her friend Carla had lupus and had survived open heart surgery and a kidney transplant. WTF.
My world crashed.
First, I would like to mention that I understand this is an able-bodied perspective. I have been blessed with a body that has worked well and long enough that I never think about it. When you’re able to run around this world carefree, your body just feels like an extension of your mind. You rarely have to accommodate it.
I remember sitting calmly and thinking about the inner workings of my body. What’s going on in there? I realized I have no freaking clue and, even worse, no control. This experience taught me why a new health diagnosis feels so scary: because suddenly this thing I took for granted, this body with all my flaws and perfections, broke my illusion of control with its autonomy. “I don’t have to work,” my body said, laughing at me while I fetal-positioned, hard, on my bed.
After a while I started to calm down. I came to understand what my mom meant when she told me what I thought was a horror story: her friend survived and, from what I hear, is thriving. She has learned to accept a fact that is true for all of us. We have no control over our health, and all we can hope for is that when we are faced with illness we cope by finding a balance between what we want to do and what our body can do. And being okay with that.
I still don’t know whether or not I have lupus. I had an appointment with a rheumatologist who ordered more extensive blood tests. I have to wait another two weeks before they come back. In the meantime I use my body to breath in, breath out, and wait.