My story.
My Unfiltered Dysautonomia Experience.
BY, ELLA EASTIN
My dysautonomia story starts with me finishing up my collegiate swimming career at Stanford. Some accomplishments in the pool that I am most proud of include:
12-time NCAA National Champion
4-time American and NCAA record holder
20-time All-American
The first woman to win the 400 IM for four consecutive years
I achieved almost everything that I set out to do in college, which I am incredibly grateful for. But, I had one goal left before I planned on retiring from swimming- make the U.S. Olympic Team. Following my graduation from Stanford in 2019, I had one year before I would step up to the blocks at Olympic Trials in Omaha to race for my spot to represent the US at the 2020 Tokyo Olympics. And, I was willing to do ANYTHING, to give myself the best chances.
When I say anything, I mean anything.
This included listening to unfounded dietary and body composition advice that led me to almost starve myself, thinking that I had to lose weight in order to reach my goals. I would take naps in the middle of the day to avoid my insatiable hunger. I would consistently say no to all social plans, even on weekends, to prevent myself from drinking or eating “too much”.
I paid tens of thousands of dollars (that I did not have) to eat the most healthy food, take the most convenient flights during travel, pay massage therapists, trainers, doctors, all to ensure the best performance.
I acknowledge that these sacrifices are common among many athletes. But what was the result despite this effort?
The inability to even attempt to perform.
THE FIRST SIGN
Following an annual altitude training trip that my team took, I returned home excited about how I was able to complete every practice of the trip, without sickness or injury getting in the way. I somehow seemed to have escaped a “flu-like” illness (that turned out not to be the flu) that plagued my team and other athletes at the training center. But, it was only a few days before I felt like something in me had changed.
I woke up for a typical Thursday morning practice in January 2020. Throughout that workout, I felt like my body did not want to spend the energy to perform. It was a weird sensation - I was able to finish the practice but it felt like my body was holding back. “Nothing to worry about” I told myself. I was coming off of altitude, a little fatigue was to be expected. I got in bed to take a nap, hoping I would wake up in the afternoon, ready to perform in practice later that day.
But when my alarm went off, and I stood up, my legs gave out beneath me, my knees hitting the wooden floor first. I find myself sitting on the ground, unsure why. The cloudiness in my brain and the fatigue I was feeling was unfamiliar.
“Nothing to worry about” I told myself, “I am probably dehydrated and need some water.” Getting up wasn’t easy, and I was home alone as my roommates were out for the day. After having a sugary snack and water, and feeling no different, I told my coaches that I couldn’t come to practice that afternoon and would be ready to go tomorrow morning. I sat on the couch the rest of the day thinking I just needed some time to recover.
The next morning I got in the pool, only to find that my body refused to go faster than slow motion. When I tell you I swam in slow motion, I am not kidding. My heart rate did not rise above 60 beats per minute, WHILE I attempted to exercise.
After about 30 minutes, I realized that today was not the day I would be performing at a level to keep up with the team and returned home to rest.
“Nothing to worry about,” I thought, “the day off will be good".”
The next day, I was back in the water, attempting to get my heart rate up higher. I was successful in swimming another half hour but could only get my heart rate to 70 bpm - not fast enough to supply oxygen to my muscles to go any faster than the slow motion speed I was working at yesterday.
Now, I was frustrated. But, I tried to tell myself there was, “Nothing to worry about,” and took the weekend to sleep.
SOMETHING’S NOT RIGHT
After two weeks of waiting for my body to miraculously bounce back, I was no longer willing to be patient. At first I was told I was experiencing overreaching, which athletes sometimes deal with after short term overtraining. This hypothesis seemed reasonable given my recent training trip and all the work I had been doing throughout the “Olympic Year”. But, I knew my body, and something was off.
I made multiple doctor appointments, which turned into dozens. I first saw a sports medicine doctor who agreed that I was overtrained in addition to being under-fueled, leading me to be experiencing RED-S (Relative energy deficiency in sport - a syndrome of poor health and declining athletic performance that happens when athletes do not get enough fuel through food to support the energy demands of their daily lives and training.”) I had lost my period, had lost libido, was not recovering well from any exercise, and essentially was left with non-detectable levels of hormones. It checked out.
What was most concerning to me, and which made sense when I was told about my hormonal imbalance, was that I had even lost the ability to get into a really competitive mindset, which used to be my greatest asset as an athlete. My training performances did not nearly compare to my performances in competition. I had the unique ability to flip a switch and perform under pressure. I had noticed for months previously that my adrenaline/ “fight or flight” system was not as sharp and was affecting my racing. But as usual, I would tell myself that I was just tired from training so hard and it was “nothing to worry about.”
RED-S made sense and MAYBE could be the cause of what I was going. But recovery would require me to minimize my time in the water, and add calories that, at the time, I was not willing to increase because of what I thought it may do to my body, and in turn, my performance at Olympic trials.
I was in a sticky situation. What do you do when you have to train to make the Olympics, but medical professionals are telling you not to? At the time, I thought, you just train. People do this all the time, “nothing to worry about.”
But this was just the tip of the iceberg. My body ultimately forced me to get on the RED-S treatment regimen as I was unable to handle a normal practice load. Now the fueling challenge was a different hurdle - I had to work with psychologists and dieticians to unlearn some of the unhealthy habits I picked up that led me to consistent disordered eating. But, at least I was starting to get rest.
I realized pretty quickly that my hormone imbalances could not be the cause of EVERYTHING I was experiencing and I needed to do more searching.
Luckily (a sensitive word given the pandemic was difficult for many) I was forced to move home because of the COVID-19 restrictions. But, I was 24 years old, living on my mother’s couch as she worked from home and simultaneously took care of my every need. If she didn’t cook, I wouldn’t eat. If she didn’t invite me anywhere, I wouldn’t leave the house. I was not me.
My main companion at the time was my cat, who was very happy to have someone to nap all day with. I took more pictures from bed and with my cat that year than I care to admit. But, this was my life.
Meanwhile, my dad was alone at his house, incredibly sick with COVID for almost two months. My guilt about not being able to help care for him more, even from a distance, was a hard one to swallow.
While I was limited in many ways, what stood out to me the most was the changes in how I felt “fulfilled” or properly distracted. Watching television was not something that I did very often given the lack of time that I had with school, swimming, and my social life. The fact that I could sit all day long, staring at the screen, not paying attention, and feeling like that’s all I could do, was scary.
And while chores are not my favorite pastime, regularly doing the dishes or laundry was not an option. I would go to the grocery store with my mom and have to take a nap afterwards because of the exhaustion that I felt just by simply being on my feet.
After days in bed and on the couch, I would muster up the energy to try and practice. I would get in the pool, excited to be able to complete half a practice, only to go home and need to sleep for the rest of the day (at least) to recover. I trained sometimes, and other times would have to take a week off to see if I would be better after a break. This cycle repeated for months as my body rejected the exercise I was forcing on it.
In addition to the physical symptoms I was having, my emotional and mental health were not at their best. How could they be? I was managing a chronic and mysterious illness in the middle of a pandemic with my life goals on the line, living at home in my mid 20s, unsure of the future. I was depressed. I am normally an anxious person, with perfectionism running through my veins. But with how little energy I had, I did not even have the energy to be anxious. I was just sad.
I missed appointments that I scheduled with doctors and would forget about practices that I had set up with my coach, something that would have NEVER happened in the past. My memory is typically very sharp, yet I began to forget what I had done the day before. Those that are close to me were able to see the drastic decrease in my functioning.
A MEDICAL ROLLERCOASTER
Ultimately, I visited a sports medicine doctor, an endocrinologist, a psychiatrist, multiple allergists, a cardiologist, a alternative medicine doctor, a D.O., and the list goes on.
The first time I saw the word dysautonomia was when one physician I was seeing wrote it on my chart as one of my “primary symptoms” in addition to executive function deficit, which is a real confidence booster.
I asked this doctor if that was the diagnosis that he was giving me. He quickly said, “that’s not a diagnosis”. He proceeded to hand me a list of unfamiliar supplements that he wanted me to take and pay out of pocket for at the pharmacy that is located in his office. I bought all of them and took them exactly how and when they were prescribed. No change. If anything, I was more tired, living as if I was on a heavy dose of benadryl all day.
With a plethora of advice, I tried: acupuncture, hormone patches, hypnosis, drinking fancy “deep sea” ocean water out of a glass vile, taking animal liver supplements, drinking tea that tastes like literal dirt, immune boosting supplements, dietary changes, adrenergic boosting spray, and more. Once again I found myself doing anything to get better, all the while having to make sure that I was within drug testing guidelines as I was regularly tested as an elite athlete. There were treatments that I probably would have benefitted from like IV therapies, that I was unable to use because of regulations.
Even after this experimentation, nothing really helped me see significant improvement. I was unable to reach a diagnosis for the symptoms I was managing: lightheadedness, extreme fatigue, restlessness, exercise intolerance, heat intolerance, orthostatic intolerance, inflammation, brain fog, cognitive dysfunction, etc.
While Facetiming with some family friends, I was explaining how I was doing and what my symptoms were each day. Within minutes, their mom, who is also a physician, said, “You just might have POTS, too” as her youngest daughter had been managing POTS and other illnesses for more than 5 years.
I immediately reached out to someone in my athletic support team and asked if there was anyone that they knew that could help diagnose me, if I was in fact living with POTS.
DIAGNOSIS
I found my way to a Zoom meeting with a physician that was an answered prayer.
He was quickly able to tell me that I met the criteria for Chronic Fatigue Syndrome, moderate depression, and orthostatic intolerance. I was right on the cusp of meeting the criteria for a POTS diagnosis. My heart rate increased 29 bpm when simply going from laying down to standing, and a 30 bpm increase is required for a diagnosis.
More importantly, he was able to reassure me that what I was experiencing was real. There was science behind it. He had seen cases like me before. He had recommendations for treatment based on his research and past patients. He had even seen swimmers before. What a relief.
My mom and I hung up the call and looked at eachother and let out a big sigh. Finally. We now had a path to be excited about.
I saw minor improvement with the initial recommendations which included an increase in salt, with the use of Vitassium (shout out to our sponsor!), and wearing compression socks.
Later I added a few medications in series to discern what was helping improve my symptoms and quality of life. The trial and error process was challenging as it required me to continue to be patient.
Summary of my diagnoses & Symptoms
Dysautonomia
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Orthostatic intolerance
Brain fog
Post Exertional Malaise
Cognitive dysfunction
Lightheadedness/Presyncope
Anxiety
Blood pooling in my extremities
Acrocyanosis
Unrefreshing sleep
Heat intolerance
Low Blood Pressure
My 9 month search for a diagnosis felt like a decade, as every day I was rushing to get back into the pool to attempt to train for a shot at making the Olympics. The average time to a diagnosis for someone with dysautonomia is 6 years. This statistic, to me, is unacceptable.
DECISION-MAKING
The first major trip that I took after becoming sick was to visit my sister for Thanksgiving in 2020. I committed to taking a break that week for the holiday as I was on the “rest” part of my broken training cycle. I sat on the porch of the house we stayed in, drinking my coffee every morning, looking at the beautiful lake surrounded by trees with colorful autumn leaves. It had been a while since I had experienced such peace.
In a moment of silence by myself, I stared at the water, realizing that I did not have the desire to get in to swim. I no longer wanted to force my body to get into a pool, and expend energy that I did not have to offer. I wanted to enjoy the small amount of energy that I did have when I was not pushing my body to its limits. I was enjoying having fewer commitments, appreciating small moments like this that I never allowed myself to in the past. In that moment, I decided that I was going to move on from swimming.
I was not overcome with emotion, but actually felt a major sense of relief. Any stress that I had about my body cooperating to get back to practice when I returned from my trip was gone. I was no longer in a rush to get better for the sake of my sport.
I was now committed to getting better for me. I was not going to be the athlete I needed to be to qualify for the Olympics by continuing to torture myself. I had done that for long enough. I owed it to my body and spirit to let go. They have done so much for me over the years, and I needed to return the favor.
The beautiful part of this decision was the progress I made in the next few months after I decided to step away. When I finally stepped away, my body had the freedom to heal on its own terms, no longer constrained by my goals on a given timeline. I slowly regained the desire to exercise lightly, to be social, to do things that filled me up emotionally.
I am proud of myself for making this decision when I did. Choosing to walk away, months from the opportunity to reach a goal that I set for myself 15 years prior, was a big deal. And I did not take the decision lightly. But once I saw the benefits of moving on, I had no regrets.
If you made it this far, thanks for sticking with me. My story is one of millions that deserve to be shared, amplified, and believed.
Coming Up:
Dys is Real, Dys is Me: grieving who I once was & embracing who I am now
Self Dyscovery: My journey to Medicine
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