What You Should Consider Avoiding
It is very possible that there are things you think would be helpful that could potentially be harmful for someone living with POTS. We understand that even with good intentions there could be unintentional harm, so our hope is that this can serve as a supportive guide to personalize.
Please Avoid Toxic Positivity
Toxic positivity is often used in an effort to help others stay positive when they are struggling, but it is exceedingly dismissive, harmful, and often minimizes what the person is going through. Examples of toxic positivity that can cause harm include:
“You just need to push through and you will be perfectly fine.”
“Be happy, you’ll be fine!”
“You’ll be great, just stop thinking about it.”
“Just be strong and it will all go away.”
“You always end up being fine so you just need to be happy.”
“Keep a positive attitude!”
“If you relaxed things would be so much better!”
“Stop your crying and put a smile on that face!”
“Why are you crying when you should be happy?”
“For someone who is sick you look great, be thankful!”
Please Avoid Dismissive Comments
Dismissive comments can be intentional or unintentional, but a good intention doesn’t make a comment hurt less. Dismissal is still dismissal and can be harmful. Examples of dismissive comments can include:
“Everyone goes through hard things like you, you’ll be fine.”
“It’s not as bad as you are making it out to be.”
“I can’t imagine you are actually in that much pain.”
“Young people like you don’t usually get sick.”
“What you are experiencing is all in your head.”
“Sounds like you are just anxious right now.”
“The provider couldn’t have treated you that badly.”
“Some people have it way worse, your symptoms aren’t that bad.”
“It’s not bad, you are making it seem worse than it is.”
“Push through it.”
“I’ve already heard about your illness, move on.”
Please Avoid Making Comparisons
It is very rare that a comparison will help someone in our community. Examples of comparisons that can be harmful for individuals with POTS can include:
“I got COVID too last year and was sick for a few days, definitely was awful. Like what you went through too.”
“I get pain from time to time too, I’m fine with it.”
“I have been really tired too, all of this work. I completely get how you feel.”
“I’m older than you so I’ve been through more.”
“I had trouble sleeping last night too but at least you don’t have kids like me.”
“I would love to not be able to work like you, wow, you are so lucky.”
“I saw someone else with POTS running a marathon so you should be able to do that too.”
“I’m a lot older than you so my pain is definitely worse, you’ll bounce back.”
“I used to have a chronic illness but it got better so you must be doing something wrong.”
Please Avoid Unsolicited Advice
This can be tricky but often individuals in our community living with POTS aren’t interested in unsolicited advice, as they have already tried everything they can and are working with their medical teams. If you have advice, it can be best to ask if they would be open to hearing about something you heard or read about. Examples of unhelpful unsolicited advice for individuals with POTS can include:
“Have you tried yoga? I’ve heard it can cure POTS.”
“Have you tried ignoring your symptoms?”
“Have you tried not thinking about it?”
“Have you tried getting outside in the sun more, won’t that help you?”
“I think you need a vacation, that will make all of this better.”
“I don’t think you should have kids.”
“You should definitely have kids, you’ll be fine.”
“You need to get out more, push through and do it.”
Please Avoid Making Assumptions
Making assumptions about how they are feeling or doing is often very unhelpful, especially since individuals with POTS are used to masking (figuratively) and minimizing how they feel to make others around them more comfortable. Examples of what some harmful assumptions might include:
Assuming they feel ok because of how they look.
Assuming they aren’t in pain because they haven’t said anything.
Assuming they will ask for help when they need it.
Assuming they are getting all of the help that they need.
Assuming that they aren’t struggling.
Assuming that their symptoms have been more manageable.
Assuming they aren’t struggling with suicidal ideation.
Assuming they are comfortable with how you’ve been treating them.
Assuming that you haven’t said anything hurtful or insensitive.
Assuming that your party or event will be accessible for them.
Assuming that if they cancel at the last minute it is because they don’t care.
Assuming that they are able to eat whatever you serve.
Assuming that they are able to have kids or interested in having kids.
Assuming that they would be fine if they got a COVID infection.