What My Life Looks Like 4 Years After My AS Diagnosis
It was a Saturday afternoon in October 2019. While I was the mom of three active young boys, sadly, it wasn’t unusual for me to be resting in bed at that time of day. I remember the moment vividly because it was when I received a life-changing call from our family doctor.
“The good news is you don’t need back surgery,” the doctor began. “However, it appears you have ankylosing spondylitis. I will refer you to a rheumatologist who will explain treatment options. Don’t worry, you won’t have to live with this kind of pain forever.”
The years leading up to that moment were filled with endless medical appointments. Many were with professionals who attempted to treat my pain, while others aimed to diagnose me.
I felt immense relief at finally receiving a diagnosis following an MRI. Ankylosing spondylitis (AS) is not a walk in the park, but living with undiagnosed and constantly increasing pain, in my opinion, was worse. Chronic pain is physically and emotionally stressful. Add to that the medical professional who hinted that the pain might be in my head. Then, suddenly, the diagnosis of an incurable autoimmune disease provided massive validation.
The relief was instant, but the reality of a lifelong diagnosis eventually set in. I continued to struggle physically and emotionally. I grieved the diagnosis and tried to come to terms with the realization that I might never be the active and involved mom I had hoped to be. I felt trapped in a stiff and pain-riddled body that seemed a half-century older than the 33-year-old me. I didn’t have much hope for the future concerning my physical well-being.
Still, a diagnosis provided hope and a good starting point for treatment. I intended to pursue mainstream treatment to achieve pain relief as quickly as possible. I eagerly awaited my initial visit with a rheumatologist, although I was on a monthslong waitlist.
In the meantime
While waiting for my appointment, the realization that I was battling an incurable and often progressive disease created enough motivation to commit to strict lifestyle modification. As it turned out, by the time my rheumatologist appointment came around, my symptoms were largely under control with alternative treatment methods.
My first-year post-diagnosis was full of unique challenges. I did a strict starch-free elimination diet, which meant eating only chicken and broccoli for a good chunk of the year (which, in hindsight, isn’t necessarily something I would do again). I became more diligent about stretching and exercising. In short, I tried everything in my power to get control of the inflammation in my body. I think it is fair to say that I became somewhat of a health nut.
It’s been almost 4 years since my diagnosis, and I continue to follow a strict, starch-free, anti-inflammatory diet, which allows me to live a life free of AS symptoms. I’m grateful to be able to share my health journey and starch-free recipes on a website I’ve created. It has brought purpose to my pain.
When we are in the thick of pain, it is hard to imagine a normal life. But I’m here to tell you that my family doctor was right: I no longer live with constant pain.
Looking back, I realize that receiving a diagnosis after decades of pain proved to be a critical turning point for me. Going forward, I plan to focus on healing my gut lining and microbiome, as I have a sneaking suspicion that it will lead to further progress in managing this incurable disease. I am so grateful and relieved that I feel healthier now than I did for decades before my diagnosis.
This blog post was originally published on September 13, 2023 in my Just Keep Swimming column @ Ankylosing Spondylitis News
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