My Journey with Autoimmune Diseases and Finding Balance in Running
From London to New York: Ignoring Reality
When I was diagnosed with rheumatoid arthritis (RA) in London, I had no idea what it truly meant to live with an autoimmune disease. I tried to ignore it, pushing through despite my symptoms, which wasn’t smart. But at the time, I thought I could outmaneuver my diagnosis.
When I moved back to New York City, I continued with this approach—ignoring the disease and hoping it would resolve itself. Spoiler: it didn’t. Eventually, I had to face the reality that I needed to take my health seriously. My NYC-based doctor offered me “tough love,” advising me to make better life choices, but I wasn’t ready to do the work required.
Struggles and Breakthroughs in Seattle
When I moved to Seattle, I wasn’t yet committed to making the necessary changes; in fact, I was still struggling. About two years in, I finally began running, and combined with dietary changes, I started to get my RA symptoms under control. Six months later, I was able to move off the heavy-duty medications I had been taking.
This decision wasn’t easy, especially since my new doctors in Seattle wanted me to stay on the meds. But I trusted myself and my body, and within six weeks of running and dieting, I was off the medications. Six months later, those very medications were pulled from the market by the FDA due to safety concerns. It was a moment of vindication, reminding me that sometimes, trusting yourself means making tough decisions, even when they go against conventional medical advice.
WTAF is Lymphocytic Colitis?
Running was the perfect solution until it wasn't. It kept my RA symptoms at bay and gave me a sense of control over my body that I hadn’t felt in years. But then, as I became more consistent and confident with my running, new symptoms began to emerge. The pain I was feeling post-run was exacerbated by running. I'd do a medium to hard run and then I'd end up in the bathroom in a fetal position for hours on end. The good news is that it didn't seem as though my pain was related to RA.
Eventually, I was referred to a GI doc for tests, including my first colonoscopy. The diagnosis of lymphocytic colitis was both a relief and a nightmare. Finally, I had a name for the gastrointestinal issues that had turned my life upside down. But now I had more questions. I was eating relatively well and doing "all of the things," and yet more questions arose...
Why was what was keeping me sane now becoming my enemy? The very thing that helped one part of my body heal was now tearing another body part apart. When I turned to my doctor for answers, the response was disheartening: “Stop running.” That was their solution? Give up the one thing that had kept me sane and was a major contributor to me feeling more energetic? Fuck no. I needed a different approach, and a different doctor.
Yeah, no. I was not going to stop running because of a new diagnosis
Piecing Things Together
Navigating this new challenge was difficult. I had to confront the reality that my health journey was far from over. The lessons I had learned from managing RA were invaluable, but they didn’t make this new battle any easier.
One of the things I tell clients regularly is that they have more agency in a situation than they think they do. I realized this was one of those situations for me. When I decided that running was here to stay in my life, I bought a Garmin watch to track data.
I knew these symptoms tended to show up after I ran. Was it a certain type of run? Was it distance-related? Intensity-related? I had to jog my memory to think about how I felt after my runs to see if I could find a pattern. I had learned how to adjust my speed during runs based on my heart rate, so I didn’t push myself too hard too early.
What I ended up finding out is that once my heart rate went over a certain threshold for a specific period of time, symptoms of the colitis would kick in. And when you add in that colitis is linked to having other autoimmune diseases, it started to make sense.
My coach and I continued to work on my fitness so I could train myself to run at a faster pace but with a lower heart rate. That took time and patience—two things I’m not exactly known for. This approach allowed me to continue running for a bit longer, which was important to me both physically and mentally.
Gaining a New Understanding
As I continued to navigate these health challenges, I also had to deal with a new diagnosis: secondary Raynaud’s. Thankfully, this one was relatively easy to manage. I quickly found that starting out on hikes with thin gloves in temperatures lower than 45 degrees made a world of difference. It was a small adjustment, but one that allowed me to keep doing the activities I loved without unnecessary discomfort.
Always packing gloves on hikes now. Small price to pay for great views!
At the same time, I continued to refine my diet to manage ongoing GI issues. I discovered that certain foods simply don’t agree with me, whether due to lymphocytic colitis or acid reflux. These adjustments, though challenging at times, have been crucial in maintaining a balance between managing my conditions and living a full, active life. Especially since meds for acid reflux can aggravate the colitis. FUN!
Managing Healthcare is an Art
As I continue to navigate the complexities of the healthcare system, I do so with the knowledge that it is indeed more art than science. It’s an ongoing process, one that requires me to stay informed, stay engaged, and stay true to what feels right for my body. And that, I’ve learned, is the true art of healthcare.
If you want coaching on how to manage your disparate sources of data, I would love to help you. This is why I started Go Long. Schedule a free intro call HERE.
