My name is Mary Jo Bacorn and I want to share my ankylosing spondylitis (AS) journey. In retrospect, I likely had AS since childhood. I was diagnosed with “growing pains” and had recurrent hip pain as long as I can remember. I saw massage therapists, physical therapists, an acupuncturist, chiropractors, a nutritionist, counselors, and medical doctors – all before age 20.
I was diagnosed with… Disc disease. Sacroiliitis. Facet dysfunction. Bursitis. Herniated disc. Ruptured disc. Sciatica. Degenerative disc disease. Chronic fatigue. Depression. I had countless spinal epidural procedures including an extremely painful nerve ablation. I had a spinal fusion. I was then told I had post spinal fusion lumbago.
I saw a pain/spine specialist for nearly a decade! But not once in 18-plus years was I ever referred to a rheumatologist. I complained of severe fatigue since my teens and was told I had chronic fatigue and was “anxious or depressed.”
I exercised daily, despite the pain. I earned a black belt in martial arts. I ran, did yoga and Pilates every day, lifted weights. I was exceptionally fit and athletic. As my symptoms progressed, I wore an SI joint belt for years. I did volunteer work in South Africa. I worked fulltime, went to graduate school, adopted our first child. I pushed myself through the pain. I lived off Advil and I knew nothing but pain. That was the only reality I ever knew.
I had dreams… so many dreams. Dreams to do more volunteer medical work abroad. Dreams to adopt and foster more children. Decades passed. Decades of untreated disease progression. But still, not once was I referred to a rheumatologist.
I only knew something was very wrong when my disease began to spread from my spine and SI joints to my peripheral joints. I lost strength and flexibility in my hands. I got Achilles tendonitis and had trouble with my ribs and sternum flaring. Walking became increasingly difficult.
Today, just simple, day-to-day activities like taking a shower are a tremendous struggle. There seemingly isn’t one joint that AS hasn’t attacked, from my jaw to my ankles. Some days, getting dressed is nearly impossible. I can’t tie my shoes anymore, or cross my legs. My body slowly and steadily began to fail me, and having a career was eventually not possible.
I had to apply for permanent disability. It isn’t a decision I took lightly. I went from an active, athletic, intelligent, highly-educated, highly-driven lifestyle – despite my chronic, severe pain – to an existence trapped in a body that continues to betray me. I lived off Advil and steroids and just thought that this was “normal.” And not once was I ever referred to a rheumatologist.
This disease has taken everything from me, personally, professionally, spiritually, and mentally. I am a mere shell of my original self. I struggle every single day to somehow come to peace and acceptance with this new reality. I grieve the old me. I grieve all the dreams I had, and that grief will never go away. I will never be “okay” with this reality. I will never fully accept this new me. I am not at peace with this, and never will be.
For decades, the medical community failed me, and thousands of others like me. And I will never forget that. If only one medical provider somewhere along my journey of 18-plus years had said, “Wait, this doesn’t make sense – why does this healthy, active 20-year-old have degenerative disc disease and degenerative changes?” What a different reality I may have had.
It is well-known that early diagnosis and aggressive treatment of this horrific disease is associated with the best prognosis, and one can even achieve a remission-like state. Conversely, it is also known that the more joints affected, the worse one’s prognosis is, and the more difficult the disease is to control.
Increased awareness means earlier diagnosis and increased funding for treatment, and – perhaps years from now – a cure. Unfortunately, today, there is no cure. The disease is progressive, and in my case, the damage is already done. Even the very best of treatments only help delay the inevitable. I live every second of every day in excruciating pain; the only difference from day to day is the location and severity.
So, if my story can help ONE person get diagnosed earlier, so that their reality does not come to be the same as mine, then it is worth sharing my story.