My Post-Diagnosis Mixed Bag of Emotions
I’ve recently hit the five year anniversary of my axial spondyloarthritis diagnosis. For some reason, this otherwise random milestone has me reflecting on that winter five years ago, all the doctor’s appointments, X-rays and MRIs, and follow-up visits that led to my diagnosis.
But more than that I’ve been thinking a bit about the months following that first mention of ankylosing spondylitis (my specific type of AxSpA). Though I was one of the many who experienced a long delay between the onset of symptoms and the moment of diagnosis (nearly 15 years in my case), I don’t think any amount of time can truly prepare someone for what it feels like to receive a chronic illness diagnosis, especially when the chronic illness has no cure. Or at least that’s my impression.
Naming the thing
For me, relief is the one word that best describes how I felt in the immediate aftermath of my diagnosis. Relief that a cause was finally identified for all those long years of pain. Relief that something larger was going on with my body and it wasn’t simply my imagination like so many doctors had implied.
Above all, relief this thing had a name. That I now had something to call it: Ankylosing Spondylitis. I now had something to research, to ask questions about, to receive treatment for.
But that relief was fleeting.
Questions about the future
My initial sense of relief and confirmation quickly dissipated within a cloud of questions. What does this new disease mean for my future? How might my life be different than I imagined? Will I still be able to do all of the things that I enjoy? What will the outlook be for me?
These questions flooded my head daily, at random times, with little warning. I would lay in bed watching TV and before I knew it, I had missed 30 minutes of the episode because I was frantically Googling every odd and terrifying question that came to my mind. Hardly ever did I find sufficient answers to my questions online, especially in those first few months.
Overwhelming worry and fear
Instead of finding answers to calm my fears, I continued to run into painful potential scenarios, worst-case outcomes, and all sorts of possible AxSpA complications. I was drowning in worry and fear, mostly from not knowing what the future may hold.
What I didn’t realize until years later was that I was depressed. I barely wanted to get up out of bed nevermind leave the apartment. Suddenly it was official--I had an illness and it wasn’t going away. I slept a lot, I watched a lot of TV, I kept the blinds closed and the room dark, and I didn’t want to talk about it. My wife was worried and tried her best to get me up and outside, but many of her attempts were unsuccessful. This went on for four or five months.
I’m not sure what changed, but eventually, I knew this perpetual fog of grief had to give. I started back into a routine--getting back into the classroom to teach, reading to prepare for my exams, taking the dogs for walks, and talking about how I felt. I decided that I needed to start making choices that would lead to a better quality of life, even if that meant changing careers, allowing more time for rest, and just being easier on myself.
Most importantly, I learned to be okay with the uncertainty of everything. Or at least more okay with it. I know now that I have no idea what the trajectory of my disease will look like, or what complications I might have five, ten, or twenty years in the future. I don’t know what this tiring, painful disease has in store for my life.
What I do know is that I can make choices to improve my pain and fatigue levels on a daily basis. And when I’m struggling to cope with AxSpA, I know there’s a community of family, friends, and fellow spoonies online to help get me through it. While this thing we call axial spondyloarthritis can sometimes feel terrifying and isolating, none of us have to be alone in this.
Can you tell when a flare is coming?