In December 2016, when I was 28 years old, I was nearing the end of my training cycle for my first marathon. I had just finished my peak long run of 20 miles when I started experiencing hip pain that was so severe I could hardly walk. I made an appointment to see an orthopedic specialist, who ordered an MRI, which led to a diagnosis of a hip stress fracture.
The diagnosis meant the marathon (my hometown race, the Houston Marathon) the following month was out. Even though my injury was on my right side, the doctor noted that he saw inflammation on both sides. I didn’t think anything of it at the time, though, and assumed it was just a running injury I needed to let heal before getting back to doing the thing I loved.
A few weeks later, however, my right thumb joint started to feel super sore and I started having difficulty doing everyday things like picking items up, holding things in my hand, and putting dishes away.
After talking to my twin sister, I learned she had been dealing with similar symptoms in her wrists, which she initially thought was carpal tunnel syndrome. She had had bloodwork done that showed high platelet counts, which ultimately led to a diagnosis of rheumatoid arthritis. She and my mom convinced me to also see a rheumatologist since there was a high chance of me having the same condition, seeing as we were identical twins.
The rheumatologist immediately ordered a blood panel to test for hundreds of different autoimmune disorders. The results came back showing only severe rheumatoid arthritis. The bad news didn’t stop there, though – that doctor told me that if I didn’t stop running and if I performed any other type of high-impact exercise, I would eventually end up in a wheelchair at some point in my life.
That was really hard to hear. I’ve been a runner since I was in elementary school and had still been looking forward to eventually tackling that first marathon. I left that visit in tears, which was also hard for my husband and two young sons, who were 5 and 3 years old at the time, to see.
Beginning to navigate my diagnosis was immediately challenging. Women are typically diagnosed with rheumatoid arthritis at any age between 30 and 60, but I was often much younger than any of the other patients I’d see in the waiting rooms at doctors’ offices.
I’d also been prescribed five different medications, and didn’t do well starting so many medications at once – it was difficult to tell what was helping and what wasn’t. Still, I took them all for a year, while experiencing side effects like frequent nausea, weight loss, and hair loss. I was also nervous about the potential for more serious impacts, like stomach ulcers.
But despite the warning from that first doctor, after healing from my hip injury and getting cleared by the orthopedic specialist – which took eight weeks, including four on crutches – I never did stop running, as it had been essential for both my mental and physical well-being for most of my life at that point, and I believed the benefits outweighed the risks. In fact, I completed my first marathon at the 2018 Houston Marathon, which is still one of my favorite racing memories to date. I finished in a time of 3:46:04, which is not too shabby for a first go at the distance.
Ultimately, the doctor’s plan didn’t feel tailored to me based on my individual situation, so after that first year, I decided to do some research to begin to advocate for myself. I came across studies that showed that not only can being active be beneficial for rheumatoid arthritis, it may also help with associated inflammation and pain. So I decided to see a different doctor, one who supported my desire to run and stay active, as well as my request to not be on more than two medications at once.
The road to managing my condition hasn’t been completely smooth since then, though. I’m currently on a combination of two immunosuppressive drugs that reduce inflammation to help manage my symptoms: Humira, which I inject into my upper thigh once every two weeks, and methotrexate, which I take orally once per week. I also get routine blood work every three months to make sure I’m not experiencing any serious side effects from the meds.
But getting here has taken a lot of trial and error, of seeing different doctors and trying different medications. At one point, I even tried going off all medications and saw a naturopath to try alternative solutions. I tried things like going vegetarian, giving up coffee and limiting sugar, and while these dietary changes did help with my symptoms, I found they weren’t sustainable for my lifestyle as an athlete.
Even with my current treatment plan, I’ve experienced flare-ups that have led me to have to take breaks from running, when even getting out of bed has been painful and difficult.
My condition has also posed challenges in parenting two young kids. My youngest was still a toddler when I was first diagnosed and it was sometimes hard to pick him up and carry him. As they’ve gotten older, I’ve learned to be mindful about managing my stress and fatigue levels to be able to help them with their school work and generally be present in their lives.
One of the most frustrating things about living with rheumatoid arthritis is not being able to distinguish if symptoms like stiffness or soreness may simply be aches and pains that come with being an endurance athlete, or if they’re related to my condition. In any case, when I begin to experience them, I scale back and take off a day or two (or even a week, depending on the severity) to be cautious and avoid bringing on a new flare.
I’ve had to learn that while I can stay active, I have to listen to my body and take adequate rest and recovery. That includes between training cycles, even when I don’t hit my race goals. While I may want to push myself more, I’ve found that my body does best with just one marathon per year, and with lower overall volume of less than 45 miles a week, in addition to regular strength and balance exercises to maintain healthy joints.
On the day-to-day, I’ve found that I need to adequately prepare my body and joints before every run. I do best if I run or work out in the evenings, when I’ve already been moving around all day, rather than shortly after waking up with stiff and achy joints. But I have training partners that I love to run with when I can, and we meet in the morning. On those days, I wake up three to four hours before we’re set to work out, giving myself plenty of time to stretch, move around, and perform some activation exercises to get my joints lubricated and ready.
I have the goal to eventually qualify for the Boston Marathon, which would mean running a 3:35:00 or faster marathon for my current age group. I’ve completed seven marathons to date and my current personal best – 3:40:33 from the 2022 Houston Marathon – is not that far off from that standard. I’m only 35 now, and they say female runners peak in their 30s, so I’m confident I will still get it in the near future.
Living with rheumatoid arthritis as a marathoner has taught me so much about myself. It’s shown me that I’m a lot stronger than I give myself credit for, which is something my husband often reminds me of when I may be feeling down about my situation. I’m always grateful to be able to just show up on a race starting line. I look at myself now and know that I’m doing everything I can to not eventually end up harming my health, like that first doctor implied I would. In fact, I’m confident that by putting myself, my fitness, and my overall well-being first, I’m contributing to a better quality of life in the long-term.
– As told to Emilia Benton
Emilia Benton is a freelance health and wellness journalist who is particularly passionate about sharing diverse stories and elevating underrepresented voices. In addition to PS, her work has been published by Runner’s World, Women’s Health, Self, Outside, and the Houston Chronicle, among others. Emilia is also a 13-time marathoner and a USATF Level 1-certified run coach.
