There Is No Universal AS Experience
One of the things that really helped me understand and move through some of the grief and confusion of my AS diagnosis was the realization that not everyone with ankylosing spondylitis would have the same exact experience.
In the early days after my diagnosis, I would gobble down, obsessively, dozens and dozens of posts and Facebook groups for ankylosing spondylitis support. If the post was positive — celebrating how well a certain drug worked, say — I got hopeful. If the post was full of grief, I took that on as my own reality.
It was almost as if I had no boundaries. Deep down, I cognitively knew that other people weren’t having and could never have the same experience as I did. But I couldn’t help but to let other people's stories and feelings bleed onto me.
It made me feel helpless and weary and like my life would just end
Witnessing such suffering and sorrow has an effect on you, and while I don’t think we should ignore each other‘s realities, we have to be cognizant that they are exactly that. Individual realities.
Not to mention, by making someone else's experience about me, I didn't give them the space or autonomy to be experiencing their own AS story.
There is no universal experience of this disease, period
It’s all variable. It depends on so many things: Your access to medical healthcare, your support system, your other health conditions, your mindset, how much you work out or move, what you eat, the medication you take, and how your body’s unique genetics express themselves.
How could there be one way of experiencing this disease? Ankylosing spondylitis has so many triggers and so many symptoms. There’s no single way that one person‘s reality could represent everyone. We all do experience pain, fatigue, and brain fog to some extent and probably pretty frequently. But that's where the similarities end. You might have luck with one drug while I don't. I might have an easier time moving than you do. You might need surgery while I don't. You might afford certain therapies while I can't. The list goes on and on.
Although we can (and should!) bond and connect over our shared experiences (and I deeply recommend you do through a social media support group or even a local support group), I think it’s important to remember that you will experience your body‘s version of this disease. And no one else’s.
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