The Diagnosis
Many will claim that getting a diagnosis is a relief. To finally have an answer is to settle the fear that it’s “all in your head.” And, sure, this was the case for me too. Ever since college, I had a nagging feeling that something wasn’t quite right with my body. However, a high threshold and familiarity with chronic pain allowed me to normalize the abnormal. Sure, on some days, I woke up and walked with a limp and felt searing pain through my body with no known trigger. On some days, my head just felt like a static dream, brain fog washing over every crevice of my mind. But, “maybe, that’s just me” I’d think. Forcing myself to come to terms with the idea that I was naturally declining was depressing.
Finally, when things became unbearable, I made a strategic shift with my health insurance, tracked my symptoms, pressed harder in doctors appointments, and boom, I was diagnosed. As weird as it is to say, I was relieved but it just wasn’t a diagnosis I thought suited me.
The first time I was introduced to this condition, I was sitting in the well lit doctor’s office of a young and lively rheumatologist. She was fresh out of med school and still quoting passages from specific units. When I explained my symptoms and she studied my referral, she immediately thought it was AS (Ankylosing Spondylitis). I scoffed to myself at the name. “There’s no way I have a disease called, Ankylosing Spondylitis. That’s the whitest sounding disease if I ever heard one” I thought.
She showed me diagrams of where in the spine, joints and eyes the body attacks itself as a result of this autoimmune disease. I listened to her as a courtesy. I simply knew this was not my disease and she was wasting her time. So, when my x-rays came back showing no signs of Ankylosing Spondylitis, I was not at all surprised.
Fast forward two years, I met with a neurologist who is, so far, the best doctor I’ve ever talked to. He asked me a few questions, reviewed my charts, and stated simply, “this sounds like Ankylosing Spondylitis.” Maybe it was the time that had passed, or the growing desperation I had for answers, or the fact that the same disease had come up again, but I finally accepted that this might be what it is. He referred me to a rheumatologist who ordered some MRIs, noting the disease often does not show up on x-rays in its early stages.
My diagnosis was anti-climatic. My rheumatologist was pretty sure I had the disease before the MRIs were done, so she’d already prescribed me something for pain management. When the results came in, I simply got the confirmation through the online portal notes of my MRI, which were written in medical language I had to decode through Google.
It is partially due to COVID that in person doctor’s visits aren’t as common. But, when I’d pictured my diagnosis, I imagined it would be in person, with a doctor walking into the observation room with a clipboard in hand and a facial expression that says “it doesn’t look good.” The doctor would sit down, so as to be eye to eye with me. I’d crack a joke to break the tension and we’d laugh our way into my diagnostic doom.
Instead, I read the note, did my Googling and that was that. AS has historically been known as a young white male’s disease. Only recently, has science uncovered the (probably) equally as common presence in women. As a black woman with this disease, I laugh sometimes, feeling as though I am a minority in most of my experiences in life, even in illness. I’m fortunate I had the care to get diagnosed and it saddens me to think of the people who sit in immense pain with no answers because they don’t have access to healthcare and/or are not being taken seriously.
There are some days where the loneliness of a disease like this gnaws. The conditions I thought I had prior to diagnosis were more common and understood. (They also had cooler sounding names.) In the 5 months of knowing I have AS, I still haven’t fully come to terms with what that means for my life but, I’m slowly accepting that I do not need to and probably will not ever figure it all out.
It may sound obvious but having an autoimmune disease does not change the nature of who you are. I thought the acceptance would come and I’d quickly learn how to be patient with my body and consider myself an “AS Warrior,” a title I see daily in the AS Facebook group. Instead I doubled down on my goal driven, hyper-success oriented traits. I signed up for a metric century (60 mile) bike ride. I decided I was going to eat my way out of the disease by only eating anti-inflammatory foods for..forever. I pushed through pain and threw myself into things I had no business doing. It came crumpling down fast. All of it.
Now, I still have the yearning to “do it all.” It’s hard watching many of my peers enjoy things people in their 20s do with more ease and less planning. It’s challenging dealing with the fear of being a burden to a partner who is extremely athletic and enjoys being active when in comparison, sometimes it’s hard for me to even stand for a long period of time. The challenges don’t fade with acceptance. I’ve just learned to face what I’m feeling and keep working through it.
I enjoy the days where I’m able to be active but sometimes I may push a little too hard. I relax when my body tells me I need to, even though I may do so begrudgingly, feeling as though my best years are behind me. I try to be honest with the people around me, setting expectations for what I can and can’t do. Still, I worry I’m disclosing too much, or letting people down, or being too high maintenance.
To oversimplify it, it’s tricky. But, I’m also grateful for the people around me who have made dealing with this easier. I’m amazed at the things I’ve been able to learn about others who also deal with invisible illnesses. Usually, through challenges come some sort of gem. No, I haven’t yet taken on the identify of “AS Warrior” but I am grateful for the diagnosis and all that has come with it, the good and the not so good.
