Support Groups
Support groups can be a great resource for someone with POTS. Online support groups are often helpful as it can be challenging to find other people with POTS nearby.
WARNING
There are a few things to keep in mind when you join a support group. In fact, I've had one cardiologist tell me to stay away from support groups, because sometimes they can do more harm than good.
There are a few things to keep in mind when you join a support group. In fact, I've had one cardiologist tell me to stay away from support groups, because sometimes they can do more harm than good.
- People who are part of a support group are generally the most sick and have the most severe cases. People with less severe cases are often too busy living their lives to be a part of a support group! Once people go into remission, they rarely go back to the support group and let everyone know how amazing they're doing now. Support groups can paint a depressing outlook for you if you're not careful.
- Advice from others in a support group is NOT medical advice. Never take anyone at their word, always do your own research.
- Support groups often have a lot of "drama". People feel comfortable saying things they wouldn't otherwise say in person. Arguments and heated debates break out really easily among some circles. Don't get sucked in to arguments. Keep in mind there are internet trolls who take great pleasure in making people upset and angry.
- Don't just assume someone is who they say they are. I've met people online and heard stories of others with Münchausen syndrome - a psychiatric disorder where people either pretend they're ill or physically make themselves ill.
- Be respectful. You'll find a lot of people with extreme views on certain topics. Do not feel like you need to convert everyone to your beliefs on a certain subject. Be okay with having different opinions.
- Be careful what you say. Anyone can "report" your comment to the support group administrators. If you are on a Facebook support group, Facebook often automatically suspends your account activities for a period of time, without always examining the situation. I had this happen to me once for a respectful comment I posted that disagreed with another person. She reported my post to Facebook and I got banned for 24 hours.
- Internet Safety. I felt the need to do a whole separate page on Internet Safety, after all the things I've seen in the past years. Click here to read my post on Internet Safety.
That all being said, here are some great POTS support groups to check out:
- Athletes with Dysautonomia - https://www.facebook.com/groups/244639292347913/
- Dysautonomia International - https://www.facebook.com/DysautonomiaInternational
*this isn't really a support group but it's a helpful page to follow* - POTS on Facebook - https://www.facebook.com/groups/75183049224/
- POTS in Vancouver, BC - https://www.facebook.com/groups/1455539908045022/
- Alberta POTS Group - https://www.facebook.com/groups/1464369757145293/
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