My name is Tia – I am 16 years old and finishing up my sophomore year of high school in Portland, Oregon. I swim competitively and that takes up most of my time. I just love the water – the feeling of it, the peacefulness. That is what initially drew me to swimming, and since then I have just fallen in love with it.
When I’m not swimming, I like hanging out with my friends, especially in nature. I love learning about the brain and human behavior; my favorite subjects are biology and physiology. I am also a foodie and am so lucky that Portland has such a diverse food scene.
This is who I was before I was diagnosed with myasthenia gravis – and who I am today, two and a half years after I first started showing symptoms. I’m still me, but the disease has impacted every area of my life.
Myasthenia gravis symptoms begin
When I first developed symptoms, it was terrible. It was January 2023, after a swim meet, and I started having shortness of breath and fatigue. This continued into June, but both my family and coaches just thought I was in a rut, which is common for teen girls in sports.
We went to tons of doctors who diagnosed me with anxiety and asthma. A lot of my doctors called me hysterical and said that I was doing this for attention. It was infuriating. It made me doubt what I was feeling.
Then in late June I had a swim meet where I couldn’t get out of the pool after my race, and my oxygen level was below 80. After that, I was diagnosed with asthma and gave me an inhaler and steroid inhaler.
I decided to take a break from swimming during the school break in August. During this break, I took a short course of 10 mg of prednisone for the asthma. My symptoms got better – I was on steroids, but I was also less stressed, both physically and mentally. Stress can trigger MG symptoms.
MG symptoms get progressively worse
When I came back and started school and swimming again, my symptoms got much worse. I struggled to wash my face and put my hair up in a ponytail. I could barely swim the length of the pool, and every day after practice, my friends had to help me out of the water.
It was scary – I knew something was seriously wrong, but I did not know what it was. I was constantly fighting with my family because I was frustrated. After all, they too didn’t believe me because of the many doctors we went to who said I was a hysterical teen girl.
One memory that has scarred me to this day was Freshman Fun Day. I was laughing with my friends, and they kept asking if I was crying because I couldn’t smile. When I laughed, it looked like I was crying. I still refuse to be in photos because I wasn’t able to smile for over a year.
My facial paralysis was terrible. I couldn’t talk, and presentations were a nightmare because my symptoms get so much worse when I’m nervous. It was when I started getting double vision that my parents finally believed something was seriously wrong. My father is a neuroradiologist, so he asked one of his neurologist friends to help diagnose me, and right away he said it’s probably MG. I was diagnosed with AcHR+ myasthenia gravis on October 2, 2023. Shortly after I started taking Mestinon and IVIG. I had thymectomy surgery a month later.
Challenges faced by those living with myasthenia gravis
I am very lucky both my parents are doctors – their connections helped me finally receive a diagnosis and get in for my surgery quickly. I know so many people do not have the same access to medical care. I’m grateful because I have been able to return to doing so many of the things I love, like swimming.
But I still face a lot of challenges. I have had to miss so much school and have had to sacrifice friendships because of my many treatments. I have to wear a mask because of my rituximab (which suppresses your immune system and makes you more vulnerable to infection). I have to get constant infusions and steroids that have made me gain weight and made my acne a million times worse.
MG has impacted my ability to swim competitively, not only because of symptoms like fatigue and shortness of breath, but also because MG takes me away from the pool. For a long time, I couldn’t have a consistent swim schedule because of treatments.
Swimming is one of those sports where you need to be in the water at least every day unless you want to get out of shape. Trying to get back to swimming was difficult and frustrating because I missed a year of swim team. When I returned, kids I was way better than were miles ahead of me.
In the ten months before I was diagnosed, swimming was dangerous and scary. Now that I am in medical remission I am building back to where I was, but it is very difficult to schedule my infusions around swim meets and my meds around races.
And, honestly, MG has made me scared. I have lost my confidence, and only recently regained some of it. I am still scared to swim because there have been many races where I feel like I’m drowning. That is very unsettling for someone who used to be the best miler on the West Coast.
How myasthenia gravis has changed me
MG has changed my life in every respect. But not exclusively in bad ways.
Before I got MG, I got stressed about everything, every race and every test. But now I realize that I can’t control everything in my life… random things can come and change your whole world, like MG did for me. MG has made me appreciate things and realize that life isn’t black and white, and my relationships and friends mean more than any grade on a test or time at a swim meet.
It has also given me a passion for educating people, especially physicians, on how to mitigate their biases. I also love sharing my story because when I was diagnosed, I felt so alone. I wish people knew that just because MG is not a visible illness, it is still very real. MG is something I have to struggle with and deal with every day, even though I don’t show it.