School With POTS
Read brave and inspiring stories from POTSies who have shared some of their experiences.
If you are interested in submitting your story, you can access the submission form here.
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Click here to read about our community member, Emma 
Where are you currently a student?
High school
What has been most difficult for you?
Personally, it's been difficult to accept I'm not the same person I used to be. I am no longer able to do most of the things that characterized me. I had to learn to lower my standards in order to not stress as much. Also going to school is summer is quite difficult since usually I get falre ups
What has been most helpful for you?
Beta blocker were a life saver, they gave me back a level of autonomy I have completely lost. As far as non pharmaceutical treatments go, compression socks are my go to, taking extra salt and a lot of water. I was also extremely lucky to have people who would accompany my when I had to go walking from one place to another, which made me feel safer.
How have you received the accommodations you have needed?
I told people at my school and everyone was super understanding. At first the only accommodations I asked for were accessibility ones, like being able to use the elevator. Then the school staff itself figured out what to adjust in order to help me. I get extra time for tests and exams and I take little brakes in between so i don't get nervous (since it triggers my pots symptoms). When giving international exams I have to send a special requirments application where a letter of my doctor is needed.
What advice would you give to someone else in our community who would like to go back to school or who has been struggling with their POTS while in school?
I would advice them to look for a flexible school, were the focus is on the student wellbeing. Also make sure you speak with the headmaster about possible accommodations you may need in advance, this way you'll ensure that the school is able to meet your requirements. Take it easy, maybe you have to do less classes, or it takes you longer, the goal is to get there even if it takes you way more.
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Click here to read about our community member, Lauren
Where are you currently a student?
College
What has been most difficult for you?
Walking and standing for long periods of time is definitely my main struggle. My college campus is very big and spread out, so getting class to class requires me to take quite a few breaks of benches and steps. I'm a part-time barista to help pay for my classes, and standing for those 8 hours is pretty difficult, too. Thankfully, my boss and coworkers are all very understanding and let me take breaks whenever necessary. I also nanny twice a week to afford rent, which is fun, but I do worry that I'll have a fainting episode while alone with the child.
What has been most helpful for you?
While it sounds stupid, getting a huge Stanley for Christmas has helped me more than anything else. Having a cute and massive water bottle to bring with me helps me stay hydrated, and my symptoms have been much easier to deal with since I've gotten it.
How have you received the accommodations you have needed?
My school gave me a number to call to have a golf cart pick me up and drop me off at my classes, but I haven't utilized this yet. Once it's hot out again, I will start taking advantage of this. My biggest fear is fainting in public and nobody knowing how to help!
What advice would you give to someone else in our community who would like to go back to school or who has been struggling with their POTS while in school?
You can do it! It's tough, but everyone here is rooting for you. Fill out your schools accommodations form and advocate for yourself every step of the way. Anything is possible, I believe in each and every one of you <3
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Click here to read about our community member, Rylee
Where are you currently a student?
Middle school
What has been most difficult for you?
Mental struggles, headaches, flushing, and dizziness
What has been most helpful for you?
Ice packs, compression socks, sleep schedule, and good friends and family
How have you received the accommodations you have needed?
At my school, I have a 504 plan that has the accommodations I need. My accommodations are ice packs at the school's office, Pass/Fail on elective classes, absents don't count, I can leave the class to get water, snacks and drinks at anytime, computer at home for make-up work.
What advice would you give to someone else in our community who would like to go back to school or who has been struggling with their POTS while in school?
You will have bad days, but you have to live for the good ones.
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Click here to read about our community member, Lizzy
Where are you currently a student?
High school
What has been most difficult for you?
The most difficult thing for me is dealing with flares, which often happen at inconvenient times such as when studying for a test, or in the heat of the summer making it difficult to be active. At times, it is difficult to feel different from others. I never know when I won't feel well.
What has been most helpful for you?
Scheduling rest time after I know I will have a long strenuous day has been very helpful. I also allow myself to rest when I need to. Salt pills are the easiest way for me to get my salt in.
How have you received the accommodations you have needed?
I am very fortunate that my school accomodates me as needed.
What advice would you give to someone else in our community who would like to go back to school or who has been struggling with their POTS while in school?
Know that you are not alone. Many people have invisible illnesses that you can't see. Lean on those close to you and be kind to yourself. Schedule time for rest. Advocate for yourself and ask about a 504 plan and/or an IHP.
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Click here to read about our community member, Emma
Where are you currently a student?
College
What has been most difficult for you?
The loss of my identity as an athlete. I grew up as a competitive gymnast, and I considered my athleticism to be one of the most important parts of my identity. Now that I have POTS, I am no longer capable of accomplishing such things, and I have struggled with feelings of inadequacy as a result. I've recently begun rock climbing and found that this is a POTS-friendly sport because it allows me to take frequent breaks, and this has helped me overcome the struggle with my identity.
What has been most helpful for you?
I manage my physical symptoms by eating lots of salt, staying hydrated, and avoiding standing for too long. If I am in a situation where I do have to stand, I make sure to keep moving to minimize the amount of blood pooling. I take care of my mental health by keeping busy to distract myself and reaching out to my friends for emotional support.
How have you received the accommodations you have needed?
I haven't asked for any specific accommodations yet, but people in general have been very understanding.
What advice would you give to someone else in our community who would like to go back to school or who has been struggling with their POTS while in school?
Be kind to yourself! I often neglected to take care of myself and put other things like academics first, but your health should always be your first priority, even if that means other things will have to wait.
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Click here to read about our community member, Katie
Where are you currently a student?
High school.
What has been most difficult for you?
Finding ways to communicate with my school community about my situation.
What has been most helpful for you?
My POTS survival kit.
How have you received the accommodations you have needed?
Self advocacy and not letting myself put other peoples preferences before my needs.
What advice would you give to someone else in our community who would like to go back to school or who has been struggling with their POTS while in school?
Communicate your struggles with your school and don’t settle for second class care. Advocate for your needs and make sure to reach out to people who can help you get what you need to go to school everyday. I’m always here for anyone who needs advice, help, or even just to talk.
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Click here to read about our community member, Avery
Where are you currently a student?
Graduate school.
What has been most difficult for you?
Being present during lectures - brain fog, and exhaustion getting in the way.
What has been most helpful for you?
Recorded lectures that way I can watch them at my own pace.
How have you received the accommodations you have needed?
Taking only online classes, reaching out to student accessibility.
What advice would you give to someone else in our community who would like to go back to school or who has been struggling with their POTS while in school?
You must advocate for yourself and don’t take no for an answer when it comes to accommodations in your education.
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Click here to read about our community member, Lou
Where are you currently a student?
High school.
What has been most difficult for you?
I really struggle with the unpredictability POTS brings into my daily life. It’s really hard to plan activities, classes and studying when I don’t know how well my body will function on each day. I also really struggle with the fact that I can feel the difference of energy I need to complete easy tasks compared to before my symptoms worsened. I now need to put in the same effort to even get up and get ready for classes I used to put in for an entire day of studying and activities.
What has been most helpful for you?
One thing that helps me a lot is that I “rate” all my tasks and all the activities I wanna do on a scale from high to low energy for every week. So instead of just having a to-do list that I feel bad about not being able to complete, I do tasks based on how much energy I have. If I’m having a bad POTS day, I will stay in bed and do some low energy tasks, rather than trying to force myself to go to my classes. I think noticing my symptoms and stepping out early has been really helpful.
How have you received the accommodations you have needed?
Mostly. I’ve been able to get extensions on most of my deadlines whenever needed. I am also in close contact with my school’s nurses, so I can call them when I am too dizzy to get to class and they can mark me off. This helps a lot, as I’m usually not able to go to a nurse physically. My teachers are informed and most of them allow me to eat snacks in class or lay down whenever I need to.
What advice would you give to someone else in our community who would like to go back to school or who has been struggling with their POTS while in school?
Inform your teachers about POTS and the accommodations you could benefit from. Many don’t know anything about it and don’t understand how much effort it takes to keep up with classes when you’re chronically ill. Also, finding study techniques that better adapt to fluctuating energy and pain levels, such as using audiobooks or movies to learn content. If you’re struggling with what to prioritise always remember that your health & wellbeing comes first :)
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Click here to read about our community member, Charlotte
Where are you currently a student?
High school.
What has been most difficult for you?
Getting teachers to understand that when I’m not in school it’s not because I’m lazy but because I physically can’t.
What has been most helpful for you?
Having good friends/support group to lean on.
How have you received the accommodations you have needed?
I haven’t in all honesty.
What advice would you give to someone else in our community who would like to go back to school or who has been struggling with their POTS while in school?
Just to keep pushing for the things you need because with time it’ll happen.
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Click here to read about our community member, Sarah
Where are you currently a student?
College.
What has been most difficult for you?
Walking on my campus is so difficult and my fatigue makes my afternoon classes really hard. I go to a pretty small school but it's on a big hill so I really have to pace myself. There's no accessible parking either (don't worry, we're working hard to fix that) so it makes parking my car to walk anywhere extremely hard.
What has been most helpful for you?
I take the elevator, walk really slow, eat a snack before my afternoon class, and drink lots of water with liquid IV! For the parking thing, we have a shuttle so I take that a lot.
How have you received the accommodations you have needed?
My school only has one full-time prof. working to get over 150 students accommodations so she's very overworked. I got an appointment with her and she worked with me to get me exactly what I needed! I have both an invisible chronic physical illness and a few mental health diagnoses so I was open about my struggles and got what I needed.
What advice would you give to someone else in our community who would like to go back to school or who has been struggling with their POTS while in school?
Don't be scared or worried about getting accommodations if you need them! Most likely, the person you'll be seeing will be super understanding and sometimes, know exactly what it's like to struggle. It's their job to help you succeed the best you can so just be honest and open and they'll try their best to accommodate you :)
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Click here to read about our community member, Haven
Where are you currently a student?
High school.
What has been most difficult for you?
Getting through the day even while feeling sick plus going to school in the first place.
What has been most helpful for you?
Making sure i'm eating properly and that i am able to use certain resources (breaks/walks).
How have you received the accommodations you have needed?
i have a medical plan.
What advice would you give to someone else in our community who would like to go back to school or who has been struggling with their POTS while in school?
Advocate for yourself and don't let others tell you about how you feel, you know yourself the best.
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Click here to read about our community member, Lynn
Where are you currently a student?
High school.
What has been most difficult for you?
Navigating around the school building safely.
What has been most helpful for you?
Keeping up fluid intake.
How have you received the accommodations you have needed?
No. We are in the process of getting a 504.
What advice would you give to someone else in our community who would like to go back to school or who has been struggling with their POTS while in school?
It will be uplifting for your spirit to be around others. Try a homeschool co-op if public school isnt for you.
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Click here to read about our community member, Meredith
Where are you currently a student?
High school.
What has been most difficult for you?
Dealing with horrible teachers who bully me for being ill and make class worse and harder than it already is.
What has been most helpful for you?
My friends supporting me and tutoring me.
How have you received the accommodations you have needed?
It’s been very difficult to, but my counselor has been good and a 504 is helpful.
What advice would you give to someone else in our community who would like to go back to school or who has been struggling with their POTS while in school?
Don’t downplay your symptoms. and it’s okay for you to be sick. Ask for help if you need it and don’t be afraid!