Hey, thanks for your message and thank you so much for supporting your friend, you rock!
First, I would suggest reading this and this to understand POTS better and just get a feeling for it.
Secondly, I’d recommend just listening to your friend if she wants to talk about her symptoms or how she feels. If it’s okay for her you can ask her questions too. Many POTS patients learn to suppress the urge to talk about their experiences as people (even doctors) don’t take them seriously at all. Some patients even start to believe what they experience isn’t real which can be very damaging to both their mental and physical health.
Often we learn to wear a disguise, we learn to not talk about our symptoms at all or how we feel, our experiences and sometimes make tremendous effort in ignoring our body, standing still and smiling while simultaneously feeling like having a heart attack or fainting so that others don’t look at us in a strange way. Our struggles are often invisible, but real.
So you can tell her that she can always vent to you about all her symptoms, she doesn’t need to pretend to be fine ever, that you’ll always believe her and support her no matter what.
Also, it’s very important to know that some days/weeks are worse than others and she might seem completely fine (”cured”) one day, while not being able to get up or walk around without getting dizzy the other. Do not tell her “But this isn’t as bad as you said it was! You seem fine!” or anything like that because it might be possible that she might just have a good day or doesn’t feel like complaining or is just very good at pretending to be fine, especially when she was told “it’s all in your head” many times.
Other things that you can do:
- We need to drink a lot! You can always take a bottle of water with you for her so she stays hydrated all the time.
- Always look out for a chair or somewhere to sit down for her, don’t assume she can stand for a long (or even short) time. This depends on her, some potsies are fine waiting at the crossroads, others need to sit down immediately almost everywhere as soon as they aren’t walking anymore, others can’t stand up at all. (That includes crossroads, waiting in line, speaking to friends you met on the street etc.)
- Many potsies try to not be “a burden” and try not not bother others so they don’t always tell you they feel bad, just if there’s no other way, so try to see the world “out of a potsie’s eyes” - always look for the next seat and try to avoid things that worsen the symptoms of your friend (ask her about it, try out stuff together if she isn’t sure).
- Stairs are the enemy. Elevators are also the enemy (but a nicer one) because standing/waiting can be just as exhausting for us. (But I personally hate stairs with every fiber of my being.)
- If she sits down on the ground in a store or somewhere unusual and feels insecure about it you can sit down next to her to support her/talk to her so she doesn’t feel weird.
- Heat can worsen her symptoms. Watch out for her if it is hot outside.
- Remind her to take her meds (if she takes any).
- We suffer from brain fog a lot. If she talks “funny” or forgets certain things especially while standing/walking it might be due to brain fog, don’t make fun of her or don’t point it out in an unfriendly way. (“Wait, I told you this just a few minutes ago, did you forget that??”)
- Be proud of her small accomplishments (even if she just manages to get out of bed on some days)
- Talk a lot/listen to her/support her. :)
Thank you so much for supporting her/us and say hello to your friend from me! :) (You can try to reach out to her family too and talk to them about her struggles)
Followers, feel free to add stuff! xx