When I was diagnosed with Ankylosing Spondylitis (AS), my world was upended.
I lived in a state of shock for the first month or so, clinging to hope that the diagnosis wasn’t really what I had.
I talked myself out of it. Or at least I tried:
“I can’t have this incurable disease, can I? Maybe I imagined my symptoms, my pain, my fatigue – all those years of unanswered medical woes.”
I thought these things while also dreading the reality that I knew was true. This disease was with me for life. Period.
And then I learned I wasn’t alone. Everything I was experiencing – emotional, social, physical, medical – was being experienced by millions of strangers I would never meet.
I only realized, years later, the social progression of Ankylosing Spondylitis is something we all experience in our own way. We with the disease have conversations with ourselves, with our friends and family, with our disease community, our doctors, our medications, our side effects.
The social progression with this disease is real and normal and natural, yet lonely all the same. It happens in different ways for all of us, and it continues for the rest of our lives as we adapt and change and grow and … well, survive our own bodies doing their best to survive.