How I Survived College And Now Everyday Life Having POTS As A Zillennial
This article was written by The Zillennial Zine’s fall editorial intern Jess Newman. Find her on Instagram at @_jess_n_. If you would like to share an article with The Zillennial, send us an email at email@example.com.
I was diagnosed with POTS or postural orthostatic tachycardia syndrome in 2015. Back then, this condition was very rare. According to Dysautonomia International, only 3 million people in the United States were affected by POTS before COVID. As of today, a lot of people are experiencing POTS as a counterpart to “long COVID.” Now it’s estimated that 6 million people are affected by POTS. A lot of people are sharing their personal experiences with POTS on TikTok which is having a great impact on spreading awareness for this invisible illness.
What is POTS?
According to Cleveland Clinic, postural orthostatic tachycardia syndrome is a condition that causes your blood pressure to go crazy when you change position. A healthy person’s autonomic system can balance keeping one’s blood pressure and heart rate, but when someone has POTS this is not the case. Every case of POTS is different. It is a condition impacted by diet, medication, physical activity, and hydration. In my experience, this condition changes over time.
In 2014, I was in my junior year of high school. I was preparing for finals and applying to colleges. I received my third shot of the HPV vaccine also known as “Gardasil.” Within two days, I spiked a super high fever and was tachycardic. I went through the entire summer having three super high fevers every day. The doctors did not want to acknowledge the correlation between me being ill and the vaccine. They decided I needed surgery for my chronic sinus infections and that would fix everything. I went into surgery and the next day I was admitted to the hospital. I woke up with a horrible headache and my eyes were super sensitive to light. I stayed at a local hospital for 10 days and then I was transferred by ambulance to Cincinnati Children’s Hospital. I stayed there for another 5 days and was discharged because my fever broke. They had no answers for me and told me to take vitamins.
By the end of those 15 days, I went from an honor student with a quick wit to not being able to hold a conversation, I couldn’t sit up by myself. It was like my body had a hard reset. I was a shell of my former self. When I got home I had to be in physical therapy every day to build up my strength, I began passing out and was a fall risk. I needed to use a wheelchair for almost 6 months. I could barely stay awake, I had to be tied to a chair to sit up to eat, and when I was awake my headaches were debilitating. I also developed nerve and joint pain.
I had to be homeschooled for my senior year of high school so I could continue to go to physical therapy every day along with numerous doctor appointments every week. I was placed on medication for my extremely low blood pressure, my pain, and headaches. I was diagnosed with POTS by the neurology department at the University of Utah. They confirmed my suspicions that the HPV vaccine is what caused my POTS. Vaccinations are among the many causes of POTS listed on Dysautonomia International. The syndrome was still so new that even though I had a diagnosis, a lot of doctors didn’t know about the condition or how to help me. I had to do a lot of my own research in order to make my quality of life better.
Tips and tricks that have worked for me
My biggest tip for college is to take your time. It’s not a race. Stress is a big factor in how severe my symptoms are and this is common for the majority of people with POTS. Don’t try to take 7 classes in a semester and work two jobs. This will cause a flare and then some.
The next thing that impacts my symptoms most is sleep. I need AT LEAST 8 hours of sleep, but my best days happen when I hit the 10-hour mark. Your body is in a constant battle and it won’t stand a chance on 3 hours of sleep with an iced coffee.
If you need a mobility aid, please use it. Trying to be brave and overdoing it will only lead to a flare. It’s really hard for me to put my pride aside to this day because I’m afraid people will look at me or talk about how I “don’t look disabled”. I always have to remind myself that if I don’t use what I need to then I’m the one who is going to pay for it later. On the same topic, if your college campus is really big, please consider talking to your doctor about getting a handicapped parking placard. Again this is something our society has put a stigma on, but if you don’t help yourself no one will! I like to look at mine as VIP parking which is nothing the be embarrassed about.
With POTS, hydration and salt intake are crucial. I got a Stanley Tumbler to keep my water ice cold and I also have a SaltStick Electrolyte drink every day. It comes in a powder that you mix with water. Not only does this mix have sodium it has magnesium which helps with pain and potassium to help the body absorb water. The best part is it has zero sugar! I know it sounds like a sponsorship (I wish!), but this is the best mix I have found that is affordable and doesn’t have a bunch of unnecessary ingredients.
I have also learned that extreme temperatures make my POTS symptoms spike, especially hot temperatures. I have never liked sweating or being hot, but now that I have POTS when I’m out in the heat I feel like I’m melting. I sweat so much and it takes my body a super long time to cool down. This drains me that day and the next too. If you have to be out in the heat I suggest that you get a personal fan, stay in the shade when you can and keep an electrolyte drink close by!
If you need a mobility aid, please use it. Trying to be brave and overdoing it will only lead to a flare. It’s really hard for me to put my pride aside to this day because I’m afraid people will look at me or talk about how I “don’t look disabled”. I always have to remind myself that if I don’t use what I need to then I’m the one who is going to pay for it later.
On the same topic, if your college campus is really big, please consider talking to your doctor about getting a handicapped parking placard. Again this is something our society has put a stigma on, but if you don’t help yourself no one will! I like to look at mine as VIP parking which is nothing to be embarrassed about.
The stigma of being disabled
A lot of people are convinced that someone who is disabled has a visible deformity or is confined to a wheelchair 24 hours a day. This is simply not the case. Being disabled is an umbrella term for anyone who has a condition that impacts their quality of life. There was this instance that happened to me when I lived in Utah. I had to go to the grocery store to pick up a prescription. I parked in handicapped parking, put up my placard, and went in. When I came out there was an old man waiting by my car accosting me about my condition and that “I should leave the handicapped parking to those who actually need it.” Mind you, there were 15 other handicapped parking spots open. If anyone ever has anything to say about your condition or that you don’t look disabled, simply meet them with facts and know their ignorance does not make everything you’ve been through less true. Try not to take what they say personally and simply say “not all disabilities are visible.” You don’t have to explain yourself.
How you can support someone with POTS
If you know someone with POTS, the most important thing you can do is be understanding! If you want to hang out, suggest an indoor activity. If they cancel plans, know that 99% of the time it’s because they aren’t feeling up to it, not because they don’t want to go. If they have been feeling bad, take them a treat or check in on them. I know the hardest thing for me is to ask for help because I don’t want to be a burden to anyone. Most importantly, advocate for them and educate others.
Lastly, being chronically ill is very taxing not only on one’s body and bank account but it can also have a big impact on one’s mental health as well. I know I fall into this category. If you would benefit from talk therapy, please seek it out. You don’t need to fight this fight alone. Most colleges offer free or lost cost therapy services to students. Take life one day at a time. Be brave, advocate for yourself and know that I’m rooting for you!
If you’ve found any other things that help your POTS, please share them below! Have you seen more people talking about POTS on TikTok? Let’s spread awareness!