If you don’t already know,

I’m James. I’m a 26 year old guy living in the Capital Region of New York. I’m an artist, musician, fisherman, fiancé to my unwavering partner, student, special education aide…

And I’ve recently started treatment for Spondyloarthritis after a lifetime of unexplained chronic pain and illness. I’m starting this blog to document the experiences I have had and continue to have as a young person, who until recently, was living completely undiagnosed and untreated.

What is Spondyloarthritis?

Upon receiving this diagnosis- I stepped outside and immediately vomited in the parking lot of my new rheumatologist’s office. Not because of the description of Spondyloarthritis above, not because I was sad to receive a diagnosis of a life-long condition, but because I was so overwhelmingly surprised to finally be believed by a medical professional.

My journey to diagnosis started in childhood, when I began complaining of back pain at the age of 4. I continued experiencing what doctors dismissed as “growing pains” into my adolescence, and in my teenage years, my fatigue and constant ailments were often seen as excuses and laziness rather than an undiagnosed disability.

I felt like a failure- Why couldn’t I keep up with everyone else? Was I really that bad? I developed a profound sense of shame for being “other” in some way I was not yet able to articulate. I just knew I was so tired and that I certainly wasn’t trying to be lazy or defiant as I was often called. This coupled with my diagnosis of Asperger’s Syndrome and ADHD made me feel like a mutant amongst men. I just wanted to be “normal,” whatever that was.

As a young adult, I internalized that sense of shame and fell into a deep depression. Like many undiagnosed chronic pain patients, I found relief in self-medication. I spent ages 18-21 wandering aimlessly and “learning the hard way,” as my mother would put it. Unsurprisingly, I did not find my answers in addiction and forged my path to sobriety.

The next four years were spent in a relentless cycle seeking out treatment for my health issues, being disregarded by medical professionals, and giving up- thinking… “If they really can’t find anything… maybe I am just crazy.”

It wasn’t until I met my best friend, Roxanne, who has had her own lengthy battle with a form of Spondyloarthritis (reactive arthritis) that I felt truly believed by another person. She quickly recognized the signs. I can still remember the look on her face when she realized I was experiencing something eerily similar to her. I can’t remember exactly what she said, but I do know that moment healed a part of me I didn’t know needed to be healed.

About a year after meeting Roxanne, I met my partner, Liz, who has carried me further than I could have ever gotten on my own. Together, Liz and Roxanne helped me begin treading the metaphorical water of seeking actual treatment. This process… sucked. It was full of disappointment, rage, and so much physical pain. I was desperate for relief and still struggling to accept that I had limitations. The ever pervasive shame I felt bled into every aspect of my life.

It wasn’t until I moved across the country from Oklahoma to New York, in pursuit of better medical care and education, that I felt a slight twinge of hope for the future. I started a grueling year and a half long process of seeing doctor after doctor. Eventually, I was referred to a neurologist who then prescribed me physical therapy for my debilitating migraines. I committed 100% to the physical therapy and started a work-out routine that became the very first piece of my treatment puzzle. Spondyloarthritis typically responds well to physical therapy, and consistent exercise is known to reduce pain for many patients.

I lost nearly 50lbs over the course of a year and began taking matters into my own hands. I started working as an aide in a self-contained special education classroom and it gave me a reason to continue getting out of bed every day. For the first time, I saw a life for myself over the horizon. I enrolled in college in order to become a special education teacher and poured myself into my work. The constant pain hummed in the background as I devoted myself to learning more about autism, education, and disability. I was determined to not be controlled by my limitations.

But, simply being determined to not be controlled by my limitations did not negate them. Things were progressing, and fast. I began nearly begging for a rheumatology referral from every doctor I saw until eventually a young resident doctor recognized my symptoms as autoimmune and inflammatory. She referred me to rheumatology and I waited 5 daunting months for my appointment. During this time, my symptoms became so severe that I reduced my work hours to only 15 hours a week.

The appointment comes and I’m immediately told that there is nothing “clinically significant” wrong with me based on my testing- the documented degenerative disc changes in my spine, +ANA, and years of documented symptoms were not satisfactory enough for this doctor to attempt to treat me.

I was crushed. I gave up. I called into work, stopped eating, and didn’t leave my bed for days. I was convinced I was going to die- soon. How much pain can someone endure before they absolutely lose their shit? And how many times can they be told that it is all in their head before they start questioning their own sanity? August, September, and half of October were a blur of misery and pain. Liz tried to keep me engaged in the process of seeking a diagnosis, but I was done.

Liz figuratively (and probably literally) saved my life by finding me an out-of-pocket rheumatologist who specializes in complex cases 2 hours from our home. She scheduled the appointment, drove me there, and sat with me as I explained my lifetime of unexplained pain and illness. I was in so much pain that I was unable to sit while I spoke to the doctor. I shuffled back and forth on my feet, pulling at the base of my head with both hands to relieve the crushing pressure on my spine, while I explained the details of the hell I had been living in. For the first time, I felt empathy from a physician. She got me a glass of water and told me to take my time- we had a full hour to discuss.

Then she did an exam, went over my lab work step-by-step with me, and calmly stated that she believes I have Spondyloarthritis and a hypermobile spectrum disorder. She explained how she came to that conclusion and the treatment options. It made total sense. The back pain, headaches, dislocations, GI distress, joint pain, depression, anxiety… It all fit perfectly.

I was immediately started on a month-long Prednisone taper to bring down the severe inflammation throughout my body. The first day I took it on October 18th, I felt miraculously healed. I had my first pain free day in years. I was thankful for the relief, but I knew it would not last. Steroids are not a viable long-term option for most patients, especially in higher doses as I was taking them.

Three days ago, on October 23rd, I lowered my Prednisone dose for the taper as instructed. The pain came back with a vengeance, although a bit more manageable than before. The honeymoon period of relief had ended and the longer process of finding a viable long-term medication and treatment plan had begun. I have another follow-up in less than two weeks to discuss the next steps of my treatment.

Today, October 25th, is a better day. I was still unable to work, but I did go for a walk in the beautiful cemetery near my neighborhood. It seems a bit odd, but being reminded of the briefness of this life allowed me some space for gratitude. I am happy to be alive, to finally be receiving treatment, and to be surrounded by love and support.

Thanks for reading. I’ll post more updates as they come.