Reflecting on My 2 Year AS Diagnosis-versary
February 27th, 2020 marked the two year anniversary of the day I was diagnosed with ankylosing spondylitis. I call it my diagnosis-versary. For me, it’s a day that’s just as significant, if not more significant than my birthday. On my diagnosis-versary this year, I made a point to eat dessert, as a small celebration…although, I still haven’t decided if my diagnosis-versary is a celebration or a day of mourning.
Am I celebrating the relief of finally having an answer to my pain? Or am I mourning my healthy body, lost to a diagnosis that signified a permanent disability? Either way, my diagnosis-versary is a day that will always mean something to me.
It's very emotional
Looking back on the day I was diagnosed stirs up many emotions — relief, confusion, stress, and grief. On February 27th two years ago, I was in a lot of pain. I was tired of suffering. At 19 years old, I was seeing my rheumatologist for the first time, an appointment I had waited months for.
My mom was with me. I had Googled my symptoms since they began 10 months prior, and had read about AS, but I wasn’t sure if that could be what I had. Of course, part of me didn’t want AS to be the cause of my pain…I didn’t want a scary, degenerative disease without a cure. But the other part of me wanted something, anything that could explain the severe lower back pain I had been experiencing. I had been taking opioids and steroids for months trying to manage the pain. So, going into my rheumatology appointment, I felt some hope — that maybe this would be an end to the pain and unanswered questions.
Once I got an appointment, it didn't take long
Not long into my appointment, I was diagnosed with ankylosing spondylitis. I was sent down for X-rays after. I remember sitting alone in the waiting room with an AS pamphlet in my hands. I felt frantic — adrenaline, maybe. I was devastated, relieved, and overwhelmed all at the same time. The same day, the rheumatologist started me on a treatment plan of biologics and NSAIDs. It was a lot to process at once — first of all, I have a disease now, and second of all, I have to start injecting myself with medication every 2 weeks. I read the words on the pamphlet over and over again, trying to pronounce them properly, trying to connect them to me, and trying to accept this new defining feature of my life.
It represents the day my life changed
Some people might not understand why I pay attention to this date at all — those are the same people who don’t understand how central AS is to my life and my identity. February 27th represents a turning point in my journey of pain — the day that my pain was given a name.
It represents the day I walked into the hospital able-bodied, with a small shard of hope left that this would go away, and walked out chronically ill, knowing the pain was here to stay. It represents the day I began grieving my old life and my old body, a process I’m still going through. It represents saying goodbye and letting go. It represents saying hello and learning to become friends with my pain, as it wasn’t going anywhere. That is why I can’t let February 27th pass by without acknowledging its gravity.
I've learned a lot
It’s hard to believe it’s only been two years. Since then, AS has been a bold presence in my life every day and I have been through a lot. I have learned a lot about living with chronic pain — the mental, physical, and social aspects. It’s been transformational and it’s been exhausting. It feels like I’ve been living with AS for 10 years, at least. But there aren’t many perks to chronic illnesses, so every February 27th, I choose to celebrate. I choose to celebrate having an answer, I choose to celebrate starting treatment, and I choose to celebrate AS becoming part of who I am. Happy diagnosis-versary to me!
Other than back pain and fatigue, what is the most common symptom that AS patients experience?