I’m not going to apologize for the length of this post. There is barely anything written about Exercise-Induced Anaphylaxis (EIA) out there and this lack of information (and therefore lack of validation) has forced me into silence. If this personal account fills any part of the large void, all the better.
A pro runner having EIA isn’t funny; it’s a tragic irony. My allergy onset in 2009 and at first it was mild hives brought on by exercise. My initial trips to the allergist proved fruitless and I was misdiagnosed and dismissed. I was declared a perfect physical specimen with ridiculously large lung capacity. This was the first time a medical professional dismissed my valid concerns and made me feel crazy. Shamefully, it would not be the last.
My allergy went from annoying to debilitating in 2012. The mild hives turned into bright pink full body hives that spread from scalp to toes. Like someone allergic to bee stings, my face swelled. Sometimes the swelling left me with pouty lips and big eyes, a quite attractive result. More often than not, the swelling and hives turned me into a pink version of the Michelin Man.
I always knew that my allergy was more serious than dermatological changes when I didn’t even have the time or luxury to be embarrassed that running transformed me into a French tire company mascot. My real problems began when my tongue and mouth swelled, my body began to seriously overheat, and I became disoriented and quickly exhausted.
Imagine you are running with a swollen tongue in a sauna wearing a 150lb weight vest. Now add the knowledge that the activity you are currently participating in has the ability to narrow your airways. Welcome to my personal hell.
What I understand about EIA is that it is a rare immune disorder in which my mast cells malfunction and flood my system with histamine. No doctor has been able to explain this to me because no doctor I’ve encountered has ever heard of it. Everything I have learned has come from the a few studies on the Internet that are limited in scope, sample size and conclusions.
To add to the confusion, my symptoms do not clearly align with the studies. Most recommend that those afflicted quit exercise, the way many people avoid peanuts or bees. Yet I’ve learned through trial and error that stopping exercise is dangerous as my lack of fitness makes small physical activities—like climbing a flight of stairs—a stress on my system that triggers an attack. Message boards (and I can’t believe I’m saying this) have been my saving grace. There I learned from others with EIA about Sweat Therapy. This kind of “therapy” suggests that purposefully triggering an attack daily through heat or exercise reduces the severity of attacks. I can either exercise every day and maintain a small amount of fitness with moderate, frequent attacks, or I can avoid exercise and have less frequent but extreme and severe reactions.
In my mind, my allergy is a floodgate. I can keep the gates open and have controllable allergic attacks every day of my life or I can stop exercising and close the gates and pray that they hold back the water as it builds in volume and magnitude. In four years, the gates have never held for long and a simple physical activity, like walking to work, leads to severe and dangerous reactions. The floodgates have failed most notably twice and sent me to the ER both times.
The worst part about all of this isn’t the hives or the exhaustion; it’s the panic attacks. EIA messes with your mind in a chicken or egg kind of way. For me, exercise can lead to anaphylaxis but if I don’t exercise, I increase my chances of experiencing an anaphylactic episode. Every single run is a test of will power and attempting to control the very real hysteria that bubbles to the surface. When I run I have to convince myself that today isn’t the day that my throat closes. I have to remind myself that the Benadryl and cell phone tucked in my sports bra are enough to save me. When my daily allergy meds fails, as they often do, I grip my Epi-Pen with sweaty hands and stand in a freezing shower praying for the symptoms to abate. Running with EIA means being in a constant state of heightened stress, which is dangerous as stress is a trigger for EIA.
According to the limited studies, only one person has died from EIA. This is no comfort because I’m positive that unless I collapsed in the office of a doctor who specialized in EIA, my death would be misclassified. I don’t feel confident with any statistics surrounding EIA when every doctor I’ve met still gives me the “say what?” expression.
My EIA symptoms have gotten worse by the year. Multiple allergists have failed to diagnose it correctly or suggest relief. All have laughed when I tell them I’m a runner with a running allergy. Only a sports doctor out in Oregon believed me and used a treadmill stress test to induce my symptoms. When I started to turn pink, his research staff filmed it and he declared, almost delighted, “it’s real!” To him, I was the medical equivalent of a unicorn. I left his office with no answers but at least proof that my EIA symptoms weren’t in my head.
As an elite runner, I have called upon my body to do so much and it has answered my prayers without exception every time. I asked it to be good enough to run in college and it ran 66.6 over the 400m hurdles with basically no training. I asked it for All-Americans and it gave me four and the unasked fastest 800m time in D3 in 2008. I asked it to be good enough to train as a pro and it raced perfectly in Hayward and earned me a spot on a US National Team. I have asked my body for personal records and it has given me not just 1 second PRs but 10 second personal bests two years in a row (4:34 to 4:24 in 2010, 4:24 to 4:14 in 2011). With the advanced progress of EIA, I have lost control over my body. I now only ask that it works and that I can keep running at all, even for two miles at ten minute pace.
To lose control over my running has been like losing myself very slowly. I have self-identified as a runner since I was 5. My mother remembers me sprinting up and down our long driveway when I was in pre-school shouting “I like to run fast.” In kindergarten, the first thing I remembering wanting to be when I grew up was an Olympic gold medalist in track. In 2nd grade, I made a terrible statue of a runner crossing the finish line in victory. In 3rd grade, my dad let me use his very exciting word processor and I penned my first bio.
I still don’t quite understand where my passion for running came from. My parents weren’t runners and my older brothers didn’t participate in organized sports (unless Nerf Gun attacks and teasing count). I didn’t have TV to watch the Olympics and I didn’t join the track team until freshman year of high school. I can only assume I was born with it. I dreamed of running before I dreamed of anything else, and in that regard very little has changed.
With EIA, I have questioned my identity as a runner. Are you a runner if you can’t run? Are you a runner if running is trying to kill you? If your body is failing because of what you love most and you don’t reject this love, are you an idiot? I did some thinking on the matter and I decided one thing: nothing has changed. I was born a runner and I will die a runner. This sport will never defeat me and I will not forfeit in the face of EIA. Like all competitive athletes, I have the option of declaring myself retired from competition. That announcement will never come.
I have not told many people about my EIA. Generally, most people laugh when they hear and their laughter cuts me. Even my doctors have abandoned professionalism and chuckled in my face. People I trusted told me it was time to quit trying. Others suggested my change in fitness was because I wasn’t trying hard enough and I was lazy. Even after I explained how EIA made me feel, I was told I obviously didn’t want to be a competitive runner again if I couldn’t even run a few miles.
Fortunately since 2012 and in the darkest time of my life, a few people have appeared like saints. My coach in Portland, Bob Williams, refused to give up on me. Even when my races fell apart, he stayed by my side. When my workouts became too much, he still met me at the track to try anyway. When even my runs became too difficult, he still met me for coffee. When I left Oregon, he still called to check-in. Bob believed in my abilities even as I was losing them.
Stubborn to the core, I joined a small elite group in Philly believing I could still race with EIA. When I failed out of workouts and runs, I told my coach, Rob Hewitt, in a moment of weakness that perhaps he should take me out to pasture and shoot me like an old racehorse. Rob rebutted that he’d lead me to pasture but I would have to pull the trigger. When the macabre jokes were done, he made a call and got me an interview for a job coaching middle school runners. Rob said that coaching brings you back to this sport and he was right. Coaching the Germantown Friends middle school team was one of the highlights of my entire athletic career, All-Americans, US National Team, 4:14 and all. Rob strengthened the very thin thread that held me to the sport and I was able to hang on.
If there existed a perfect example of how sports parents should be, my parents would be it. They have never once pushed me in this sport and have only opened doors. When I graduated college as a D3 scrub with no sponsorship, agent or connections, my mom and dad saw what I was up against and stepped in. They became de facto sponsors, bus drivers, travel agents, and sports psychologists.
Everything I have done in this sport is because of their unwavering love. When I was diagnosed with EIA, as they have done my whole athletic career, they followed my lead. When it was too painful to talk about, we were silent. When the loss of competitive running was too great, they let me cry. When I beat myself up, they defended me even against myself. Perhaps the greatest gift of all was that my parents have always kept the faith. These past four years have been the hardest of my athletic career and yet my mom and dad still believe in me and my running fiercely. They know that it’s interwoven with who I am and it cannot be separated. They never told me to quit or to get over it or to stop running. They have protected my dream even when it could barely exist.
Last month, I went for a run with a Haverford alum who predated me by 6 years. I accidently ran into him and as we had never really met I was so excited to share stories of Tom, Riz, sub-4s and to learn about his training post-pro running. We ran 4 miles in 7 something and even though I knew I was going to pay for it later, I stuck the pace. I was desperate for my version of normal before EIA where I could do anything I asked of my body. I was desperate to talk about Haverford running, one of my favorite topics. When the price became too much to pay, I bowed out of the run and walked home. I spent the next two hours talking myself out of a panic attack, trying to lower my core temp and monitoring the state of my swelling face and tongue.
The next day I called my parents to tell them about my run with Karl and my worst EIA reaction to date. At the end of the conversation, my Dad mentioned that my mom had been reading about 14 person study done years ago in Japan that implicated gluten as a trigger for EIA. I scoffed as the Head of Allergy and Immunology at Oregon’s biggest hospital cleared me of a gluten allergy 3 years prior. (That doctor will be receiving a strongly written letter soon.) I had even tried removing gluten from my diet for a few weeks at some point so I didn’t believe gluten was part of my EIA. Then my Dad asked if I could get clear of my symptoms, what would I do? I couldn’t verbalize my answer because it made me so sad but I very clearly saw myself standing on a starting line again. My parents asked me to keep the faith so with nothing but a 14-person study and a prayer, I quit gluten.
Three weeks later, I stopped experiencing EIA symptoms.
During my first symptom free run, I waited for my internal temp to rise but it never did. Hives did not take over my body. The 150lb weight vest that I had been wearing for four years was thrown off. My running form, bedraggled from years of EIA and the exhaustion it causes, changed. I was lithe. I floated. I covered ground silently and easily. I sprinted. My heart rate hit 154bpm and kept going and I was the runner I remembered. It was—quite simply—one of the best days of my life.
I am not allergic to gluten but it is a trigger. I don’t understand why gluten brings on EIA symptoms and for now I’m not overly curious. That is the question for next month. This month is just for running free.
The other night I was speaking my mother and I was bemoaning the loss of 4 years of training. I had always imagined my late 20s as when my best running would occur. Now, although delighted that I can run freely, I felt the terrible weight of trying to regain some of my prior form. My mother, without missing a beat, said, “Annick, you have rested your legs for the past four years. You have had no injuries. You have fresh legs.” My mother, the pragmatic optimist, knew exactly the right words to say.
Since that conversation I have been recalculating my running age. While my contemporaries went to Footlocker and states, I only began running volume (over 15 miles a week) at 18. I took four years off at 26. In terms of mileage and workouts, I’ve got the legs of a 22 year old. Either I can despair that my 30th birthday is a few months away or I can decide it is time to address my entirely too soft 3k PR.
After all, I too am pragmatically optimistic. I have never been fair weather with my running. I have hung with it even when it’s literally tried to kill me. Four years of desperate runs and failed workouts and I never gave up on my identity. Doubted, absolutely. Abandoned, never. I’d be lying if I said that I knew for sure that I would escape EIA. I believed I wouldn’t and still I kept my sense of self, and my running shoes and my dreams. I don’t know if my symptoms can be held permanently at bay by restricting my gluten intake.
I just know that—for now—it begins again.