How I Got Here
Once upon a time I was a healthy twenty four year old woman with plans of her own, until something took a bite out of my left hip. This creature, we'll call it Bad Nessy, wasn't satisfied with my hip. She found me irresistibly delicious. Bad Nessy gnawed all the way up to my neck and then down to my feet, making stops to set fires along the way.
Seronegative isn't the same as nonexistent
My doctors had tests, and tests, and then more tests which is a necessary and hilarious approach to seronegative illness. Seronegaive is a term used to describe aspects of illness that don't show up on blood labs. It's necessary, because seronegativity can't be established without labs. And we've got to know as much as we can about what's happening. Sometimes ruling things out is the first step to an answer. It's hilarious because everybody in rheumatology knows there are lots more DXs and disease processes going around than there are tests. Running these labs is better than random decision making with darts, dice, or a Magic Eight Ball, but nothing so definitive as a pregnancy test. Sigh...
Negative is good, right?
Friends and family had questions about my labs, and greeted every negative result with optimism, but I wasn't getting better. Bad Nessy just kept rolling along, making me sicker and sicker, making everything about my life harder. She didn't play coy with my doctors forever. Unlike her famous namesake, they managed to get her on imaging. This was satisfying because I had proof, but it didn't make me any better. And those test results didn't make my life work. In the years since my diagnosis, Bad Nessy dug her fangs into my life, sucking away energy and vitality-swapping in fatigue, damaging my relationships-leaving me somewhat isolated, and limiting career development-leaving me behind my peers, and preventing me being a mother.
Spondylitis strikes most patients in young adulthood, when we're just getting started and figuring things out. This is a time for fitting in, developing professional and social networks, completing education, and building the foundation for the rest of our lives. This isn't a great time to be tired all the time, missing meetings and appointments, or trying to explain not living up to potential when you “don't look sick”.
There weren't many AS patient resources available early in my illness. There were the weird and unhelpful doctor's pamphlets, publicly available research summaries, and a few other random scraps, but nothing that spoke to my issues as a patient. A friend with lupus put me on to the websites she was using and The Spoon Theory. This was the first time I ever felt seen and heard since getting AS.
Finding my voice
I founded Spoonie Chat in 2013, on Twitter. Initially, it was meant for other arthritis patients. Over the years, my community grew to span DXs in neurology, dermatology, endocrinology, mental health, and lots of other communities. Over the following six years we grew a name for ourselves through my Twitter advocacy and answering questions. I'd like to think that we've changed what it means to get an AS DX, making it less lonely and more hopeful, but we're not done. I'll bet you have something to add!
Do you use the word disability to describe your AS?