When I crossed the finish line of my first half marathon the day before my 27th birthday, I fell to my knees and sobbed. It was a moment I’d never imagined possible in my wildest dreams. I was the little girl in elementary school who always had to sit on the sidelines while my classmates ran the mile in gym class. I’d come a long way.
While I look completely healthy on the outside, I was born with Cooley’s anemia, less commonly known as beta thalassemia major. It’s a rare genetic blood disorder that is only thought to affect around 1,000 people in the United States, according to the Centers for Disease Control and Prevention (CDC). There are various types of thalassemias, or inherited blood disorders, and mine is the most severe. From the time I was a baby, my parents were told I’d probably never be as active as most kids, or even live as long—hence the extreme surprise of finding myself on the other side of a race finish line.
Quick biology lesson: A protein called hemoglobin allows red blood cells to carry oxygen from the lungs throughout the body, including to major organs like the heart, as the CDC explains. But thanks to malfunctioning bone marrow, my body doesn’t make enough red blood cells, and the ones I do make also don’t function as well as the average person’s. That means my body also doesn’t always have enough hemoglobin, which is pretty key for survival. Basically, my body has to work harder to stay alive and function as normal.
While there’s no definitive cure for Cooley’s anemia, it’s a highly manageable disease if you’re fortunate enough to have access to proper care, which I do. My treatment plan is pretty straightforward: Every two weeks like clockwork, I spend five to eight hours hanging out in an outpatient clinic, receiving two units of red blood cells by IV. I also take medication to manage the extra iron in my body, which is a byproduct of receiving donated blood. Since I began receiving treatment almost immediately after I was diagnosed when I was 6 months old, this is the only lifestyle I’ve ever known.
When I’m in need of a transfusion, it feels sort of like when a cell phone battery is losing its charge, hovering in that red zone for longer than feels comfortable. I become exhausted in a way that no amount of hitting the snooze button can fix, so anything I do feels like an intense effort. I can feel my heartbeat more keenly and get out of breath just climbing stairs or walking my dog around the block. My skin gradually becomes paler, and the dark circles under my eyes deepen.
After I get a transfusion, it’s like someone has waved a magic wand over my entire life. My complexion, energy, and mood all transform into brighter, shinier versions. By the time the second bag of blood finishes and I can head home, I feel stronger, and by the evening, I’m as good as new. I get a week of feeling on top of the world, maybe 10 days if I’m lucky. Then I’m on a creeping, downhill slide from feeling just OK to counting down the days until I can get refueled.
I began running when I was in college mainly to see if I could. After spending my life underneath doctors’ magnifying glasses, trying desperately to stay healthy, there’s no better feeling than running simply because I feel good enough to be out there moving forward. I’ve yet to find anything as successful as cardio at making me feel alive, which brings me back to that half marathon.
After running for a few years, I really wanted to try a long-distance race to see what I was capable of, similar to the reason I started running in the first place. I knew I couldn’t run every day, and especially not on the days when my transfusion was coming up, but I wanted to see what was possible. I didn’t know anyone else with Cooley’s anemia who ran or was as active as I was, which I suppose is partly why doing a half marathon felt like such a wild idea. But I set a goal, and I wanted to achieve it. I wanted to know that my Cooley’s anemia couldn’t hold me back from doing things I loved.
When looking around for half marathon training plans, I kept seeing advice about running four to six days a week and increasing mileage every week. Instead, I drew upon my years of running with Cooley’s anemia to figure out what seemed feasible for me: trying for three three- to four-mile runs a week, with just one long run of six miles or greater every two weeks. I made sure my longest, toughest runs aligned with when I had gotten my last transfusion and was physically strongest. (I’m not a doctor, so this isn’t training advice to anyone out there with Cooley’s anemia—it’s just what felt safest and best for me after decades of getting to know my body.)
Through it all, I tried to listen to my body. When I’m due for a blood transfusion, one mile feels like a very hilly 12. Some days, I knew I could push through this feeling safely. Other days, even the shortest runs felt like too much to handle. Those were the days when I tried to be kindest to myself. Although it’s rewarding to use exercise as proof that this disease doesn’t define me, it also means that taking a break can feel like I’ve let myself down. But overexerting yourself when you have low hemoglobin can be dangerous, and I knew my safety was most important.
Crossing that finish line taught me that Cooley’s anemia doesn’t need to stop me from running, or from anything really, but also how important it is to understand my own boundaries. In the six years since then, I’ve run four more half marathons, and I’ve carried that lesson with me as I keep chasing my runner’s high.
With time, I’ve become even better at respecting my body’s limits, which are fluid. Sometimes that means taking an unplanned rest day or calling it quits early in a workout, actions that used to leave me feeling defeated and frustrated. While that disappointment still stings, it doesn’t ruin my day quite like it used to, and it helps to know I’m ultimately doing the right thing for my body and mind.
Having Cooley’s anemia has forced me to place a premium on my health and genuinely appreciate my body for what it can do while simultaneously accepting its limits. In that way, my Cooley’s anemia has actually been a blessing. While it’s easy for some to see exercise as a punishment, I consider it a luxury. Sitting in hospitals my whole life means I’ve seen a lot of people who are unfortunately dealing with far more devastating circumstances than mine.
Regardless of the diagnosis scribbled on my medical charts, fitness has helped me prove to myself that I am healthy and capable. I run because I can and because I view it as an incredible privilege. Chronic illness or not, being active gives me a chance to see how vast and vibrant this life can be.