Chronic Illness a Journey of Strength, Self-Discovery ... and Salt

Chronic Illness a Journey of Strength, Self-Discovery ... and Salt

By Emmi van Zoest

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The first time I rode in an ambulance was in May 2024. I was in the middle of my 10:30 a.m. Communication 200 class when I realized my vision and hearing were failing. I couldn't keep my legs or arms straight and I couldn't speak.

The full memory is hazy, but I found myself sitting outside of Crash's Market in the University Student Union with a handful of salt packets and on a Facetime call with my parents, who live in Tennessee.

This experience didn't come out of nowhere. I have postural orthostatic tachycardia syndrome, or POTS, a chronic condition that I've lived with since my junior year of high school.

There's not a lot known about POTS, but it's a disorder affecting the autonomic nervous system. When I switch positions (postural) - especially when I go from sitting to standing upright (orthostatic) - my heart rate rapidly increases. On average, it's over 100 beats per minute (tachycardia).

POTS leaves me with a slew of symptoms. Daily, I experience dizziness, nausea, fatigue and brain fog, among others. Some people who have POTS faint frequently, even daily. I'm lucky enough that this doesn't typically happen to me, but I do experience presyncope, which means I go through all the symptoms of passing out while still fully conscious. When it occurs, I'm not able to see, speak or hear anything. I'm so dizzy I can't walk straight. I get heat flashes. I remember only bits and pieces of what happens during these moments.

The severity of my symptoms can vary, leading to an episode like the one I suffered in May 2024. If I have been walking or standing for too long, sitting for too long, am stressed out or if it's hot outside, there's a higher chance of an occurrence.

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That day in May, while I was on the phone and sitting outside of Crash's Market, my parents called the paramedics. Determining that I couldn't walk anywhere on my own and wouldn't be able to for several hours, they took me by ambulance to the emergency room at a nearby hospital.

Though it was my first time in an ambulance, I had made frequent visits to the ER over the previous four years. The process this time was the same as it had been for prior trips: They measured my vital signs, checked my heart with an electrocardiogram and did blood work to confirm POTS as the reason for the incident. Then I received an IV.

IVs have been incredibly helpful. People with POTS struggle with low blood volume and tend to get fewer nutrients from the food we eat. An IV provides quick hydration and extra electrolytes.

I also constantly consume extra salt, which helps improve blood volume. I add salt to my food, but in extreme cases, I will just eat plain salt packets.

At restaurants, I always take an extra handful of salt packets from the condiment stand. These live in my purse or backpack, and I keep them handy in case I feel an episode coming. Some of my friends even carry salt packets when they're hanging out with me.

Despite the challenges, I try to focus on the positives. This journey has taught me to advocate for myself and surround myself with people who care about me, which is easy to do at Cal State San Marcos.

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Self-advocacy became a necessity as I went through many months of doctors' appointments during high school trying to figure out what was wrong. Several doctors said everything I was going through was normal. But I knew it wasn't.

I wasn't officially diagnosed with POTS until two years after my first symptoms. I had COVID twice during that time, and doctors believe that may have exposed an underlying condition.

POTS is a chronic illness, meaning there is no cure. I'm a regular at the doctor's office, with multiple appointments every month. Attending events causes heightened anxiety - both for me and the friends I'm with - and I do my best to be prepared in case of an episode.

I had to take another ambulance ride in March. A friend and I were at a Kelsea Ballerini concert in San Diego. Though I had been fine the whole day, I started feeling nauseous and dizzy during the first opening act. I couldn't stand. By the time Kelsea took the stage, the combination of the heat, crowd and strobe lights proved too much. My friend had to help hold me up as she guided me down the stairs to find the medics.

Situations like this are frustrating. I don't want to be a burden to friends and family, and I don't want friends constantly worrying or family having to pick up slack.

I've made some lifestyle changes in an attempt to lessen my symptoms. I take daily medication to ensure that my body keeps the right balance of salt and water. I drink tons of water with extra electrolytes and salt added. I try to walk every day to get my body more adjusted to moving. On hot days, I carry a mobile fan. And I also make sure to eat well.

When I decided to attend CSUSM, the Disability Support Services office proved invaluable - they set me up with first-floor housing so I could avoid stairs (and anyone who has spent time on campus knows it's no easy task to avoid stairs at CSUSM!).

I also have learned to be more open about my condition. Through my on-campus job as a writing intern in the University Communications office, I've made great friends and found people who understand and support me. The experience has been an important part of pursuing my goal of becoming a writer.

While CSUSM has helped me grow, my family and I made the difficult decision for me to move back to Tennessee at the end of the spring semester to focus on my health. I've had my share of challenges, but I also know how difficult it has been for my family to get calls in the middle of the night to learn I've been taken by ambulance to the ER when they're 2,000 miles away.

Though I'm heading east to finish college, I'll always be thankful for my time at CSUSM - for the friends I've made, the support I've received and the confidence I've gained in sharing my story.

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