Hi. I’m Michelle, and I live in St John’s, Newfoundland, Canada. I’m a mom, a wife, and a novelist and short story writer. I was diagnosed with ankylosing spondylitis in late 2012. I’ve shown signs of it since puberty, but nothing was taken seriously until my first bad flare when I was 20, in 1991. I was textbook for AS, with sacroiliac, hip, knee, sternum, jaw, rib, and gut involvement, and one thoracic vertebra inflamed, and severe fatigue. My docs looked other autoimmune diseases, including lupus and ulcerative colitis, finally saying “We don’t know.” I have to wonder if my being a woman delayed my diagnosis, as, back in the 1990s, it was still accepted without question that AS showed up much more often in men.
Things settled a bit, until inflammation affected my gallbladder and biliary tree, sending me on a painful, years-long voyage from doctor to doctor, one of whom flat-out told me he thought I was a liar. This inflammation led to severe pain, an inability to eat, and several hospitalizations, even after my gallbladder was removed.
I developed pain and swelling in three thoracic vertebrae, but they looked normal on X-rays. Everybody shrugged.
In the late summer 2009, I felt a familiar pain in my lower back. By October, I needed crutches to walk. I ended up admitted to hospital, where an orthopaedic surgeon correctly guessed what the problem is. My province has very few rheumatologists, so the wait to see one, even for an emergency patient like me, was almost a year. The ortho did his best to look after me in the meantime. Once I saw the rheumie, he figured undifferentiated spondylarthropy but changed the diagnosis to ankylosing spondylitis once I responded to Enbrel.
Ah, Enbrel. I loved it. It made a real difference for me, and it did so quickly. It also damaged my right optic nerve. I have lasting eye pain, vision disturbance, and photosensitivity. Sometimes I need to wear a patch over the bad eye. I cannot take any of the other TNF-inhibitors, because they carry the same risk of nerve damage that Enbrel does. I am waiting to see if an interleukin inhibitor now in phase three trials gets approved.
My rheumie tells me I have a “heavy burden of disease.” I like the poetics of that phrase. I’m not so thrilled with the meaning.
I work a 40-hour week, raise my kids, and write my books, none of which I could do without the constant support of my husband. That I can still work, that I am fortunate there, is not lost on me
AS has re-written my life. I’ve had to change many long-term plans. My social life is pretty thin. It’s difficult for me to get out anywhere once I’m done my workday, so I’m grateful for online contact. I’ve detached from many desires and worries; I simply cannot satisfy them. I need forearm crutches to get around, and the pain can be appalling, utterly crippling. Despite aggressive treatment, I feel I am slowly getting worse.
But I have made friends I would not have otherwise met.
I will not allow this disease to fuse me into despair.