Swimming Upstream
My Story.
By, Sam Pearson
“What I learned living in a less reliable, more complex body is that it is more important to understand myself than it is to be understood by others.”
My Medical Mystery
My teammates and I were gearing up to defend our title at PAC 12’s and compete for a NCAA championship, which were in 4 and 6 weeks respectively, but every time I swam the fatigue I felt was overwhelming. I could barely complete consecutive practices, but I tried to push through. Afterall, I was swimming for one of the best teams in the country. My coaches Greg Meehan and Tracy Slusser, were both highly qualified, serving on Olympic and National teams, passionate in their pursuit of excellence. I was training alongside Olympians, World Record holders, and NCAA champions. Taking part in Stanford’s storied swim program had always been a dream of mine, but I felt my dream slipping away: The more I swam the worse I felt.
A month previously, I tested positive for COVID-19. For the most part it was a normal infection. I spiked a 103 degree fever and took ten days to test negative, but otherwise I felt fine.
With the championship meets looming, I went back to practice eager to catch up. However, when I got back in the water, I could immediately tell something was off. The fatigue I experienced was far worse than anything I had ever experienced before. I would swim for a few practices, and inevitably end up wiped out and be unable to swim the next couple of days.
In class I couldn’t pay attention. I could sit through an hour-long lecture and not be able to recall much past the title. Homework that used to take me an hour or two took the whole weekend to complete. I took midterms having to reread questions 4 or 5 times just to understand what it was asking, only to completely lose my train of thought in the middle of my answers.
As my health continued to deteriorate, I developed a myriad of unexplained symptoms.
Brain Fog
Fatigue
Unrefreshing sleep (12+ hours a day and naps before noon)
Tingling/Numbness in Hands and Feet
Rashes on my Neck and Face
Sound and Light Sensitivity
Headaches
Depression/Anxiety
Heart Palpitations
Increased/Spiked Heart Rate
Nausea
Dizziness and Presyncope
Hair Loss
Blood Pooling in my Hands and Feet
Excessive Sweating
In February, I had 14 visits with Trainers, Physicians, Psychologists, and Psychiatrists.
Some thought my symptoms were caused by anxiety. Others thought it may be Overtraining Syndrome, Relative Energy Deficiency in Sport, Chronic Fatigue, or Long Covid. Despite the lack of consensus on a diagnosis, all the medical professionals agreed on one thing: I was in no shape to compete. I refused to listen to them. Growing up in an environment that values accomplishment and being part of a community that celebrates success, I felt ashamed that I couldn't keep up, that I couldn’t contribute to my team’s pursuits.
While my mind would not accept the doctor's orders, thankfully my body did and it made the heartbreaking decision for me. I was forced to take a step back and cheer on my teammates from the sidelines. We had grown so much as a group since September and I so badly wanted to help achieve the goals we set as a team. I felt like a disappointment.
As my teammates were packing their bags to leave for Seattle to compete at Pac 12s, it seemed to me everyone else's life continued to move forward while mine had abruptly stopped. I felt stuck. I could barely get out of bed in the mornings, and once I left my dorm, my plan for the day would be the path of least resistance back to bed. I struggled to bike around campus or walk up stairs without my heart pounding in my ears. I was depressed and experiencing severe anxiety. I felt completely alone, no one understanding what I was going through. I didn't even understand what I was going through. I began to question if what I was experiencing was even real. Blood work was coming back normal, and the doctors had no answers.
My Diagnosis
In March, I finally received a diagnosis from the Chronic Fatigue Clinic at Stanford. They said it was Post Acute Covid Syndrome, more commonly known as Long Covid. I felt partially validated. Being diagnosed with a syndrome is tricky because you can’t test for it. To be diagnosed one must have enough of the many symptoms to check off the required boxes. My symptoms checked enough of the boxes, however I still had some that were unexplained. My mom came to the Chronic Fatigue appointment with me, and afterwards, we devised a plan to get my life back on track. I would have a “Mellow March” to heal and then an “Active April” to get back to my old self.
After my teammates won a PAC 12 title, I watched them go off yet again to compete at the NCAA championships, and with my last ounces of strength, I completed my finals and went to visit my grandparents in Portland, Oregon for spring break. I was still not feeling well and “Active April” was quickly approaching. I fell asleep while reading on the couch multiple times a day. My grandmother, who just had a stroke, invited me to do her rehabilitation exercises which involved a series of movements: sitting up and down in a chair, stepping to the right and left of a folded up blanket, or just standing upright working on balance. My heart rate skyrocketed. I was a Division I athlete at a top tier program, barely able to keep up with my 80 year old grandma.
Later in the week, my grandfather took me to walk around Portland. We walked around for twenty minutes and I developed a migraine, accompanied by nausea and severe fatigue. I could not shake the feeling that something still was not right.
When I returned to Stanford, I asked my primary care physician, the working residents, and the chronic fatigue specialist, about a form of dysautonomia called POTs. Each doctor told me I did not fit the criteria for POTs. If I wasn’t completely brushed off, I was told I didn’t faint, which was a necessary box to be checked, or that my episodes of presyncope (the feeling I was going to faint) were not long enough to constitute a diagnosis.
When spring quarter began, I followed the advice from the Chronic Fatigue specialist to try to integrate back some normalcy. I found that if I broke up my homework into chunks and took breaks in between I could accomplish much more in a day's time. If I felt a crash coming, I had a plan to divert it. I started doing short, light workouts such as pilates, cycling, and erging. The bike across campus became less daunting. However, I continued to experience light headedness, blood pooling in my hands and feet, recurring rashes, nausea, and adrenaline surges that would last for hours and leave me bedridden for the rest of the day.
Four months after my initial COVID infection, my athletic trainer and I were still concerned about these persistent symptoms, and I was referred to the Stanford Neurology department. There, an Autonomic Disorder specialist diagnosed me with Postural Orthostatic Tachycardia Syndrome (POTs) and Mast Cell Activation Syndrome (MCAS). The best way I can describe it is that when I stand up, my blood vessels don’t squeeze to keep the blood in the top half of my body, so it pools in my feet. As a result, my brain and abdominal organs have reduced blood flow and my body compensates by increasing my heart rate. Simple activities, such as taking a shower, can spike my heart rate to 160 BPM. Mast Cell Activation Syndrome is characterized by immunological mast cells inappropriately sensing a pathogen in the body when there isn't one, releasing histamine, an inflammatory molecule. My Mast Cells, especially in my stomach and on my skin, were releasing histamine and drawing blood to areas that did not need an inflammatory response. I was left with recurring nausea and rashes. Both of these illnesses were triggered by my original COVID infection.
My Takeaways
While there is no cure for POTs and MCAS there are many different ways I can manage my symptoms, such as reducing histamine through diet and medication, wearing compression socks, drinking more water, eating smaller, more frequent meals, increasing my salt intake, and taking medication to reduce my heart rate spikes and adrenaline rushes. I have been able to participate as a subject in numerous research studies with the medical school, such as looking at biomarkers for Long Covid and POTs, as well the physiological correlations and mechanisms of these two diseases. In following the advice of my specialists in Long Covid, POTs, and MCAS, I have found myself living a more normal college life. My hope is that with time my symptoms will subside.
Looking back, I realized I spent so much time trying to prove to people I was sick, trying to make the people around me understand what I was going through. Deep down I was afraid that maybe none of this was real, maybe this was all in my head. The morning my teammates left for Pac-12s, I woke up to text messages from all of them telling me why they loved me. This meant so much to me. Over time, those messages made me realize that it was not important that the people around me understood the intricacies of my medical diagnosis and the struggles that come along with it. What was important was that they loved and supported me no matter what I was going through. What I learned living in a less reliable, more complex body is that it is more important to understand myself than it is to be understood by others.
No one should have to prove to doctors they are sick, or convince them the severity of their symptoms. The average diagnostic delay of dysautonomia is 5 years and 11 months. This delay occurs because there is a general lack of knowledge of Post Viral Illnesses and Autonomic Dysfunction among medical professionals. My heart aches for the people living with complex chronic illnesses who do not know or who have been told it is all in their head. I believe it is critical to spread awareness to patients so they can advocate for themselves and to medical professionals so they have the necessary information to make correct diagnoses.
I am so grateful for the medical professionals and resources available to me so that I could be diagnosed in a fraction of the average time. I am so thankful for Ella for understanding me every step of the way. I would not be swimming right now if it weren’t for her guidance and support. I am also thankful for the athletic training staff, for believing me and helping to put me back together. I am so thankful for my teammates, friends, and coaches for loving me unconditionally, and being there for me in ways they may never know. Lastly, to my family for always picking up the phone and for fighting alongside me every step of the way.
Thank you to our primary sponsors, Nurse Mates®, Vitassium by Salt Stick, Honeydew Sleep, ReLeafPack.
Audio Accessibility Feature brought to you by Nurse Mates®.