Hope Tourtillot is a 21-year-old woman from Detroit, Michigan, currently living in New York City and studying at the New York School of Interior Design. When she was in high school, Tourtillot was diagnosed with postural orthostatic tachycardia syndrome (POTS), an autonomic nervous system disorder.
In 2021, when she was in her senior year of high school, she suddenly fell ill and began experiencing rapid, unexplained weight loss. She continued struggling with a lack of appetite, rapidly losing weight, and feeling immense fatigue and nausea, cycling through several doctors before undergoing testing that revealed she had the antibodies for both COVID-19 and mono virus. When her symptoms persisted, more testing led to her POTS diagnosis.
Today, she manages her condition with constant care, carrying bags of salt, portable fans, and electrolyte packets inside her purse everywhere she goes. While she has grown in acceptance of her condition, she still struggles to deal with weight fluctuations, temperature regulation, and discomfort with wearing garments like compression socks that are meant to alleviate symptoms but instead feel unaligned with her tastes.
On her diagnosis:
“I got diagnosed with POTS my senior year of high school after having COVID and mono at the same time. It was a long process. It was the end of the pandemic, and I was just getting back into sports, and when I first went back to basketball practice, I was throwing up every day. I would do a drill and then go to the garbage can and throw up. At first, I thought it was just, ‘Oh, I’m out of shape,’ and my body was just getting acclimated, but then it didn’t stop. I was also rapidly losing weight, and I didn’t really know what was going on.
My mom came to our first game and had a panic attack because I looked so ill. She hadn’t seen me, and I was always a very muscular girl in middle school and early high school, and I just looked very frail. She took me to the hospital after that game, and we did a bunch of bloodwork, and that continued into a year-long process of changing doctors and trying to figure it out while continuously, rapidly losing weight and not really being able to eat. I never had an appetite, and I would try to force-feed myself, but I could only get a couple of bites down. I was never hungry, and I had really low energy. After a bunch of different rounds of getting transferred to different doctors and such, we found out that I had the antibodies for mono and COVID.
POTS wasn’t known as well at the time. It’s a lot more well-known in the medical community now because it’s very common for it to be a COVID long-hauler. There are a lot more young girls with it. When I was first getting all this bloodwork done and getting passed around to all these doctors, a lot of people didn’t even know what POTS was, so it wasn’t an option in their mind. I was getting asked a lot about an eating disorder, and it was really, really frustrating. There was a lot of blame put on me, of, ‘Oh, it’s just anxiety,’ and ‘Oh, there’s a lot going on.’ I was like, ‘No,’ and my mom was getting really frustrated.
At one point, everything had my mom kind of questioning me, so we would try to eat together. She would watch me gag up food and not be able to eat. It was a very emotional and frustrating time. With women’s health – POTS, even before COVID, it’s an illness that mostly affects young women – it feels like there’s not as much research. Thankfully, a lot more doctors know what it is now.”
On how her condition affects her relationship with her body:
“I completely have a lot more body image issues, just because I’ve been so many different weights. I was always very muscular, very athletic, and I became very frail and, I dunno, Slenderman-like. I didn’t notice much change in my body until other people pointed it out, and I started hearing, ‘Oh, you look so good.’ But it’s like, I was so healthy growing up. When people are like, ‘You look healthy,’ but I’m the most unhealthy I’ve ever been, it’s hard. Even if they’re not openly commenting about your weight gain or loss, as a young woman, how the world treats you is noticeable.
With POTS, I have cortisol issues. When my body is in a fight or flight situation, it loses weight rapidly, and I won’t have an appetite. Now that it’s managed, my body’s kind of like, ‘We can’t have that happen again, where in a week we’ll lose 10 pounds. We need to hold onto everything.’ So there’s a lot I’m still figuring out with that. But just changing and being so many different body types, and the views from others of those body types changing, it’s made me more aware of how I look.”
On how her condition impacts her dress practices:
“I have three pairs of a lot of the clothing items I wear all the time because I’ve been through so many different sizes. Even today, my mom called me because she saw an order from Urban Outfitters, but it’s because none of my clothes fit me right now. I have so many different sizes of clothes. Having to dress for a constantly changing body type, I have to wear a lot of different silhouettes. Depending on my weight and how it’s fluctuating, I definitely change what I wear. I just have a massive amount of clothing because half of it won’t fit me at a given time.”
“When I was working as a cashier in my senior year of high school, we were not allowed to sit down at all. It got to be summertime, and it was really, really hot. So to make that job functional, I had to wear compression socks, or I would be super lightheaded. Even though it was the middle of summer, I was wearing pants every day just because I needed to wear compression socks, and compression socks are not the cutest thing ever. It’s a lot of rainbow and crazy patterns. You can find black pairs, but they’re still odd-looking, especially the knee-high ones that work the best for me. It definitely affects how I dress. I don’t really wear shorts anymore. I always have to wear pants if I’m wearing them.”
“There’s also waist compression garments, but those are so uncomfortable. When it was really bad, my doctors were recommending wearing one when I was out and about. But people don’t know what it is, and it kind of looks like I’m wearing a waist trainer. I bought one back then, and I was like, ‘This is so uncomfortable, and it looks like I’m wearing a weird little thing on my waist.’ I don’t really wanna be doing that.”
On daily maintenance practices:
“I take a shot of salt every morning, which really, really helps even just with getting out of bed and feeling like I can stand up for long periods of time. I am a very big snacker because there’s a very quick turnaround time from me feeling sick to me not being able to stand up. So I try to minimize that risk as much as possible. I do a lot of preventative care and salt intake to make sure everything is okay.”
“If I’m out and about and walking, I should be wearing compression socks every day, but I’ve kind of replaced that with my pack of items. I always have salt with me. I always have a snack. I always have Liquid IVs. I have a little pouch in my bag at all times. It’s less preventative than the socks, and more like, in case something really bad happens, I have things that will get me to a safe place. Sometimes, if I know I’m going to be standing more than usual, I will have the compression socks on, but it’s usually just my little pack in my purse. When I go to something like a concert, I’ll bring one of those pop-up seats.”
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