Katelyn’s POTS Journey — How Chronic Illness Taught Her to Adapt and Embrace Life
My story starts with my very first POTS (Postural Orthostatic Tachycardia Syndrome) episode in a place you would least expect it, sitting down in a movie theater. At age 12, I was watching a movie with my family when I started to feel “off.” My stomach hurt, my head became fuzzy and I passed out. The next thing I knew I was in the clouds, or at least the character in the movie was flying. I woke up to a big blue sky, white fluffy clouds, and a terrified mother and brother. My brother was also slightly mad at me because I had dropped the popcorn. After a multi-day hospital trip with every test known to man, I was misdiagnosed with a “migraine variance” which is just a fancy way of saying an abnormal migraine.
It took another 4 years of random symptoms, searching, and unknowns before I stumbled across a neurologist, whom I had gone to see for my chronic migraines. On the very first evaluation, she had mentioned POTS, EDS (Ehlers-Danlos Syndrome), and MCAS (Mast-Cell Activation Syndrome) to me. At the time all of those things sounded so far-fetched and rare that of course there was no way I could have it. Or could I?
It took me another two years, until I was 18, and was having an increase of symptoms with still no answers so my mother started to research POTS and the trifecta. That same neurologist who mentioned the trifecta referred me to a well-known POTS doctor who, by only looking at my poor man’s tilt-table test, diagnosed me with POTS because my heart rate and blood pressure results undeniably fit the POTS criteria. I was advised to follow the typical non-medical management strategies of increasing my salt and water intake, exercising, and going slowly during my positional changes.
I went off to my first semester of college with those strategies firmly in my back pocket. Halfway through the semester, I started to crash hard. I became extremely fatigued, had horrible flare-ups of my joint pain, and started to get random stomach pain and nausea, all things I had dealt with in the past, but not at this severity and frequency before. My social life and school work both started to pay. My schedule would consist of going to class, and then sleeping and then eating and then sleeping and then class again, and then sleep again. I tried my best to get back to my room each day to sleep some more and try to feel slightly human again. During Thanksgiving, I decided to drop out and come home and by Christmastime, I was home again and ready to focus on my health.
From the beginning of 2019 through 2023, my world consisted of trial and error and an endless search to manage my symptoms until finally found a combo of three medications, 8 grams of salt per day, an average of 90-100 oz of water per day, and saline infusions three times a week (more infusions during flares and the dreaded Autumn) to manage my POTS. This combines with another 29 other medications for pain management, MCAS management, hypersomnia (sleeping too much), fatigue, migraines, and gastrointestinal issues (IBS-M) all to become a somewhat functioning human again.
It was only until this year (2024) that I started to have a social life. I went back to college and started to do community college with one class a semester and more than enough accommodations to help me through. I found friends, ones who are also disabled, and understand what it is like to have to deal with doctors, failing health, and living in a world that was not built to accommodate you. I started to fully rely on my mobility aids (cane, wheelchair, etc.) without fear of judgment or worrying about what anyone might say. I used only to be able to go into a store for less than half an hour before having to sit on the floor or leave, but now with my wheelchair, I can be out and about up to an hour, sometimes two hours on my good days.
I learned that it's no use waiting for my life to look exactly the way I wish before I can start living again, or else I’ll be waiting forever. I used to tell myself “I’ll start doing things when I get better” “I’ll start going out when ____ is under control” “I’ll start doing things when ____ is fixed.” If I had kept doing that then I would still be laying in my bed wishing for my life to start. Grief is not linear, and there definitely are times during flare-ups when I will grieve for my old health, even grieve for my baseline health that I had before the flare, a time when I was able to sit upright without issues, but knowing no matter my situation, I can find a way to adapt my life to it, gets me through.
Having a disability and chronic illness has put me through more in my 24 years than most people have to go through in their lives. I’ve dealt with more hospital visits than I care to count, hundreds if not thousands of doctor appointments, getting a port, getting a feeding tube, losing the ability to eat any food due to allergies, becoming allergic to antihistamines, and having anaphylaxis over and over again. Despite all the negatives it has made me incredibly resilient and strong, giving me a community of people who can understand each other on an almost indescribable level, and I truly could not imagine my life being any different.
