Can you give a brief description of what POTS is?

“POTS stands for postural orthostatic tachycardia syndrome, and basically this means that when you stand up, you will possibly black out or faint. This is due to blood vessels not constricting, and this releases a hormone which increases your heart rate. Your heart rate will spike, and you’ll get all dizzy and there’s no blood in your brain. Only about 30% of people with POTS pass out. Other times, they’ll experience symptoms such as light headedness, dizziness, brain fog, fatigue and headaches.”

When did you start experiencing symptoms and when were you diagnosed?

“I started experiencing symptoms when I was 16 and was diagnosed over this past summer when I was in the hospital. I was more formally diagnosed a couple weeks ago when I saw an electrophysiology cardiologist.”

How has POTS affected your academics and extracurriculars at college?

“I feel like POTS has the biggest effects on extracurriculars as far as running goes — it makes me feel awful when I run. I’m always tired. I’m always exhausted. I’m no longer able to go run six miles and feel awesome. I can do maybe four miles, but there’s still a chance that I’m going to pass out afterwards. That can be very mentally frustrating, and my body just feels horrible all the time. It doesn’t feel great to pass out a lot, and that kind of brings me to academics. I feel like during classes when I should be focusing on the content we’re learning, I’m constantly checking my heart rate monitor and blood pressure monitor to make sure that I’m not going to pass out or that it’s not spiking and getting really scary high. Also, with the brain fog, what professors say goes in one ear and out the next. Today, I passed out when I was working in admissions, and then 10 minutes later I had class. I went to the class, but I have no idea what I learned in the class because after I have an episode and pass out, I lose my memory for about 30 minutes. I have no idea what my professor told us.”

Why did you decide to make your TikTok content about POTS?

“POTS is not uncommon. A lot of people have POTS; the problem with it is that it’s poorly understood. In my case, I was diagnosed with anxiety panic disorder, so they put me on some meds, I got a psychiatrist and they sent me on my way. Being on those meds actually turned out to make my symptoms worse, which we just found out. This is happening to many people — almost everyone you talk to with POTS will say they were also misdiagnosed as having anxiety and panic disorder, but anxiety does not cause you to pass out when you stand up. That is a heart rate response. I want to spread awareness and make others more aware of what the situation is and if they potentially think they have it, they can get it checked out so they don’t have to wait four years like I did.”

What is it like to have a service dog on campus?

“It’s fun. My service dog —his name is Feather — he’s the little black one you see around campus. He is trained to alert me before I pass out. There’s a certain smell that my body gives off, so he’s able to pick up on that smell. It’s a hormone that’s in my sweat glands. He also does a heavy breathing response, which is where if I’m walking up steps and I’m out of breath, I’ll get really light-headed and won’t notice it until it’s too late, and he’ll put his paw on my knee and be like, ‘yo, you need to calm down.’ He also performs deep pressure therapy, which helps push the blood through my body and get it back up to my brain. I have experienced some problems with students thinking he’s not a legitimate service dog because he’s small. This is not the case. I have spent way too much money on his training. He is absolutely legitimate. Too much time has gone into training this dog, like, leave me alone! I’m just trying to be. But it’s fun, I bring him to practices and bring him to classes. He really helps me out a lot.”

Is there anything else that you want to share?

“POTS is typically known as an invisible illness because if you look at me, I look perfectly healthy. I might have a heart monitor on and I have a blood pressure monitor on my upper arm, but I’m always wearing sweatshirts because I’m always freezing because of POTS, so no one sees that. People might see the dog and think that I’m just bringing my pet around with me because I look perfectly healthy, but there’s no ‘look’ to having a medical condition. There’s no ‘look’ to being disabled. Passing out almost every day is not normal and I just wish that people understood that there’s no ‘look’ to being disabled. It happens, a lot of people deal with this. I just want it to be known and for people to become more aware of it.”

“Follow me on TikTok @sitstayrenee”