I was diagnosed with spondylitis in September 2014 at the age of 22. After about a year of AS symptoms and an intense flare where I was left immobile for weeks, sent for MRIs, chiropractor visits, physical therapy, and put on prednisone and various narcotics for pain, it was a trip to South Africa which instigated my investigation into autoimmune conditions.
I had traveled south to spend a month getting my CELTA (Certificate of English Teaching to Adults) certificate. While my pain lessened presumably thanks to stopping my daily runs, I ended up having a severe flare resulting in eye pain. After frequent trips to the nearby eye clinic in Grahamstown, South Africa and a perceived diagnosis of pink eye that refused to go away, I was sent to East London, three hours away to see an ophthalmologist. Upon immediate inspection with what seemed to be quite superior technology, he informed me I was suffering from uveitis. With my eye half shut and painfully sore, I smiled…Finally! In my former reductionist mentality, I thought “Great, now I can treat it” – the downstream effect that is.
To my surprise, he proceeded to be inquisitive. This was new to me – he kept asking me questions about other symptoms, drawing parallels and what seemed to be messy lines in his head – but never once did I mention my back pain. As you might know, these flares come and go; I hadn’t felt significant back pain in a few days so, naturally, it was not something of concern and I never thought to bring it up….especially to this eye doctor. However, inevitably he probed about back pain or stiffness. I confirmed those feelings, interested in his correlation, and further noted my sacroiliac pain I had been seeing a physical therapist for. He told me those symptoms may be related, but no additional further discussion was had. Quite frankly, when he left the room to grab my prescription of steroid drops, I was relieved, and no further questions were asked.
As my eye pain started to subside, I started doing my research. I was notoriously a self-proclaimed google doctor and, of course, a non-medically trained researcher. But I was curious. I sought to find correlations between my nondescript google searches: “back pain,” “leg hurts”, and “uveitis” (I was proud of remembering that one). It’s from there that this new word “spondylitis” started to litter my screen.
At my next check-up visit, I asked about this possible connection and the ophthalmologist confirmed that I may have an autoimmune condition and to get tested for HLA-B27 upon arriving back in the States. His first comment was to supplement treatment with diet starting with eliminating gluten as his family (all HLA-B27 positive) does. That was the first time I heard of “gluten” and the first time I thought about food.
When I returned in September 2014, I went straight to my primary care doctor and my sports medicine doctor who both seemed stunned with my persistent pain. While they were quite indifferent about this South African ophthalmologist’s advice, I pried and prodded my way to a blood test and MRI. Two days later, my sports medicine doctor personally called me back, “I’m amazed! I have never seen a woman with a confirmed positive diagnosis of HLA-B27!” I wish I kept that follow-up email because it really was a moment of both pride, excitement and frustration, pride for asking the questions, for advocating for myself, excitement for the presumed/treatable answer, and frustration in realizing how often these conditions go unnoticed, unexplored.
I was immediately referred to a rheumatologist – passed away from the physical therapist, the sports medicine doctor, the chiropractor. I was given a series of NSAIDs to try, each causing worsening gastrointestinal pain and fatigue. My nanny job was still leaving me limping, with joint pain, barely able to touch my foot to the ground. From there, my rheumatologist began the conversation about biologics. But maybe it was the injection? Maybe it was the thought that I had failed? Maybe it was the worry that I would be stuck with biweekly medication? I’m not sure exactly what it was, but my gut cried out “I just can’t” (the more I think about it, it was probably just the Meloxicam). But regardless, I didn’t want to surrender. I didn’t want to jump the gun and live my life on injections. I thought to myself, I either learn how to take these medications religiously or I learn how to eat healthier. I thought about the pills I took with breakfast and dinner. I started to wonder why I worried about my medication but never once thought about my breakfast or dinner.
And of course, my situation was different. My progression was slow and steady. I was young. Especially for a woman, I was diagnosed very early. I felt like I had time on my side. I didn’t want to risk the possible complications. And at 22, I felt like I could handle it.
It was on that ride home that I decided to try out the Paleo diet. I had started to google search diets after arriving back in Seattle, but nothing had stuck. I look back and wonder why. I don’t think I valued, or truly understood, the value of food as medicine, as an opportunity to heal or hurt our bodies. This is when dietary interventions became the forefront of my personal treatment plan.
Despite my rheumatologist denying the legitimacy of food as medicine, I now understand why. Not only are doctors following standards of care, they recommend medications because it is there job to help patients heal, to give them a life full of walking and ease of getting out of bed. They recommend medications because most individuals want a quick fix, it’s definitely easier. And it’s tough to ensure follow-through with lifestyle and dietary recommendations. If a patient hasn’t met a certain stage of change, it’s hard to even advocate for additional measures. They are doing their best to provide the best of what conventional medicine has to offer – innovative, evidence-based interventions to treat the downstream symptomatology and ease the burden of disease.
However, I now have greater dreams, greater trust in my body. While medication is still an option on the table and may be something I start to incorporate to further support my healing, I have built a toolkit of self-interventions that support my body and help it thrive. As life is never linear and there are always divots in roads, my journey has come with its setbacks, its potholes. I have trialed several different diets to discover my own food triggers. I am not perfect at maintaining my stress resilience, sleep habits and exercise routines, but what I do know is that they’re valuable pieces of my healing puzzle.
I hope to share with you my experiences with autoimmune disease and why I am so passionate about supporting patients with tools to encourage their own self-advocacy. I hope to equip patients, and practitioners, with the tools that they need to improve health literacy and equity.