If I have seemed distant or forgetful, or taken a long time to respond to you over the last several months, I might have had good reason. Sure, there was a sizable amount of time on my part spent scrolling through Instagram or playing Animal Crossing, doing the type of things that don’t make for a good excuse. But, as I must tell myself in order to forgive myself, to get through and understand each day, these are coping mechanisms for everything else I have been up to.
For a while now, I have been spending a lot of time visiting a primary care doctor, a therapist, a gastroenterologist, an ophthalmologist and a new rheumatologist. When I’m not with them, I’m spiraling between midday naps, the ones I take to fight my crushing fatigue and insomnia. Or doing my stretches, and then going to hide under a weighted blanket and panic about not doing them. And then since I’m already at it, it is only natural to start panicking about the physical therapy appointments I have yet to set, the pills I sometimes miss because I hate putting them into their daily organizer or something else.
Really, all of this has been slowly manifesting itself in my life for a few years. I started getting lower back pain — okay, and I will just say it, since I think the linguistic taboo is ridiculous: upper butt pain — during my senior year of high school. I talked to a former doctor and did some physical therapy, which seemed to help, but it never went away.
Still, until this year, I internalized a dismissive tone about my pain. I was just sitting too much, maybe laying around and scrolling too much. I figured that only having leg pain for a period of time meant it was probably just sciatica. When it came to the lower back pain (as we called it), I assumed it was a common complaint, nothing medically urgent, that scans would be pointless.
So when my new doctor ordered testing for the first time, immediately after seeing her as well, I was surprised. She had an unlikely suspicion, as she called it, but wanted to check it out all the same.
A few months, two MRIs and two rounds of bloodwork later, the rheumatologist to whom she referred me diagnosed me with just that unlikely condition she had initially suspected: ankylosing spondylitis, or AS. AS is an autoimmune disorder, specifically a type of arthritis. The body’s immune system attacks joint tissue, which can cause the bones to erode and/or fuse together.
If AS sounds familiar, you might know of it from videos by YouTube channel The Try Guys, as one of the creators, Zach Kornfeld, has publicly shared his own diagnosis. I watched his first video about AS on Buzzfeed, but unsurprisingly have avoided the update video he titled, “i’m getting worse.”
I had known my diagnosis with AS was a possibility for months, my mother relaying all Google had to offer on the subject, but the news hit me harder than I ever expected.
On one hand, getting a diagnosis was a huge relief, a validating one and proof of my pain. With the ability to understand the causes of my pain, I also found a new understanding of forgiveness towards myself. However, the diagnosis was also a confirmation that I have an incurable disease. For AS, one that can get much worse, causing even permanent body alteration over time.
It was easier to conceptualize AS as a “thing” before I knew for sure that it was happening inside of me. Once my rheumatologist told me I already had bone erosion in my left sacroiliac joint, once I started to learn and remember the language of this condition, things changed.
Perhaps as a coping mechanism, a form of denial, I have been dealing with medical imposter syndrome. I can see the notes that I take about new symptoms and flare-ups when they happen, but start asking all the same, am I not just being dramatic? I can go into my medical records and see the evidence of what is happening inside my body, but could I be imagining some of it? Even now, writing this, I am questioning myself.
Some of my self-questioning reveals internalized ableism, and I have made it a priority to reflect on this in order to combat it.
Even before my diagnosis, I did questionnaires in physical therapy that labeled me as having a mild to moderate disability. Yet, I have only just begun to self-identify as disabled, to learn the language of disability and use it around others. I know that “disabled” is not a bad word. I know that being disabled is not a bad thing and does not change your worth. But why, then, is it taking so long for me to accept it in myself?
Perhaps some of my internal conflict stems from having an invisible disability, one that is not obvious to others. My most prevalent symptom is pain around my tailbone that ranges from mild to severe. It is pain that makes it hard for me to walk and sit, especially without my funny-shaped ergonomic cushion. One of my many anxieties about starting this semester, was simply not having the ability to sit on the hard plastic chairs for my two and a half hour classes.
On the bright side, the first treatment I tried has been working so far — I have not had the pain in weeks. This also means that I am able to avoid immunosuppressive drugs for now. The idea of having to start taking them during a pandemic terrified me.
But starting the new treatment has led to more questions. For two terrifying weeks, I waited for the results of bloodwork that my rheumatologist had ordered to screen me for lupus. A decision that was made after I discovered severe sores inside my mouth, sores that made it extremely difficult to eat, drink and even talk. The tests came back negative, revealing it likely a side effect of the treatment that has been taking away my pain.
Will it come down to a choice between different kinds of pain and starting intensive medications? When will I have to make this choice? This semester? Even my old sleepless-night question springs back up: will I ever feel “normal” again?
Despite everything, this journey has made me certain of a few things.
I know now how important it is to validate your experiences and advocate for your health. I got lucky with the second opinion from my new primary care doctor, leading to my diagnosis. If I had not been lucky in that way, I would have needed to start fighting for myself at some breaking point.
I have learned to trust my body and mind, even if believing myself is a challenge sometimes. I remind myself that I would never doubt a friend, not for a minute, if they told me how they were feeling.
And so I extend this attitude to others. You, with an invisible disability, with a body that seems to rebel even when you nurture it, with doctors or loved ones who do not understand that your pain is real, I see you. I know how exhausting it is to chase answers, accommodation and acceptance. I hope to help others choose empathy, to listen when you stand up (or sit down) to tell your stories.