Hello.
I HAVE SO MUCH TO SAY… But I am going to start with an introduction.
My name is Ella Eastin. While typically recognized for my athletic performances as a swimmer - 4x American record holder, 12x NCAA National Champion and USA Swimming National Team member- I am here to open up about a new journey of mine. One that I hope will not leave me more recognized than before, but lead to greater recognition of a whole community- those battling dysautonomia and chronic illness.
My dedication to swimming led to a record-breaking collegiate career and set me up for success on the Olympic level. However, in 2020 while training as a top contender for the US Olympic Swimming Team, I suddenly fainted one morning. I sought medical care but struggled to find an explanation for my symptoms - chronic fatigue, lightheadedness, orthostatic intolerance, and brain fog. For months, I attempted to train at the highest level while my body rejected the exercise I forced on it.
It wasn’t until a year later that I was diagnosed with Chronic Fatigue Syndrome and dysautonomia, an umbrella term for conditions resulting from autonomic nervous system dysfunction. Data show that those with long COVID can experience symptoms indicative of dysautonomia, long past any detectable viral infection. Thus, a subclinical COVID infection may have triggered my illness. I followed every recommendation in an attempt to quickly regain my health and get back in the water. But, I was ultimately forced to reconcile that I would not heal in time for the Olympics and decided to retire from swimming.
If the word dysautonomia is unfamiliar to you, you are not alone. While writing this blog and, well, anything else, dysautonomia is underlined in red, unrecognized by the dictionary. It is frustrating to say the least and is a small but significant reflection of the minimal progress that has been made in making this condition recognized on a greater scale. And this minimal progress is not due to a lack of effort.
Patients, experts, and advocacy groups have been working tirelessly for years to increase recognition, funding, and research efforts. My firsthand experience with this debilitating condition ended my professional swimming career, set me on a path to pursue a new career as a physician, and has motivated me to bring awareness to those fighting invisible chronic illness and disability. And that is why I am here.
Why “Dysunderstood”?
I asked my personal following on a few social media platforms: “What words represent your dysautonomia experience?”
The most consistent response:
Misunderstood.
Dysautonomia Understood=
While sharing my experiences may not lead to the NIH granting the (deserved) millions of dollars necessary to fund further research on dysautonomia and related conditions, if I am able to reach one individual fighting their health battle, or inform one person of the reality of chronic illness, it is all worth it.
Thanks for visiting. I hope you return to hear more of my story and the stories of others. I am excited to invite guests to share their experiences here. I want to know what helped them, what hurt them, and what they are still searching for. I wanted to create a place of positivity. Somewhere that people with and without dysautonomia, touched by it or not, and those that want to understand have a place to go.
I am by no means an expert, but I am an open book.
Welcome to dysunderstood.
A few posts from me that you can expect later:
My Story: my unfiltered dysautonomia experience
Dys is Real, Dys is Me: grieving who I once was & embracing who I am now
Setting Boundaries: how I kicked my guilt to the curb.
Thank you to our primary sponsor, Vitassium by Salt Stick.
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