Support groups are wonderful for those of us with illnesses others just don’t get. No one outside the POTS community thinks jokes about fainting, salt, or compression stockings are funny. No one else can relate to the mortifying events like fainting during sex. Groups on Facebook can be great and convenient, but also hostile and dramatic. I know illness can lead to high tension, but we are supposed to be supporting each other! So here are some things I noticed happening a lot; things that need to stop.
1. “This cured me; it will cure you!”
Suggestions are more than welcome in support groups, but people often fail to make a very important distinction. Saying something may help or it helped you is not the same as insisting something is a cure. POTS has seen a lot of this because it is under-researched. People insist a workout program, biofeedback, a diet, or drug is the cure for this disease. While we are all incredibly happy that it helped for you please stop getting people’s hopes up! POTS is not caused by the same thing for everyone and there are different types, manifestations, and comorbid diseases. To imply that because you were helped by something everyone will be is incredibly ignorant.
2. “I accomplished _____ through hard work; you can do anything!”
Support groups are about support- celebrating good and bad. So if you graduated nursing school or ran a marathon I will be so happy for you! However, saying “don’t let this get you down” or “you can do anything too” is doing more harm than good. Some people are genuinely limited by the same disease. Not being able to accomplish things like exercising, attending school, or working is devastating. Feeling like you should be able to because others with your condition can is even worse.
So I suggest that we encourage each other but keep in mind that some people are extremely limited. Not all of us can “push through” and run or work again. Being unconscious tends to put a damper on that.
3. “It could be worse”
It can always be worse. It is true, but it shouldn’t affect how we empathize with each other. Someone’s struggle doesn’t have to be diminished by another struggle and seeing someone struggle with something worse isn’t going to make you feel better.
4. “At least you don’t have…”.
Nuanced from the “it could be worse” in #3 the “At least you don’t have…” differs in one key way: comparing yourself.
I will admit that I have fallen into this before. Sometimes when I see people complain about something that doesn’t seem like as big of a deal I fall into this mindset. I try to remember is that just because I may feel that things are worse for me doesn’t make things easier for the other person. It is still difficult for them! And that is the entire point, they are seeking support, a place where they can complain and relate with others. When we compare our situations to others we are taking that place away from one another.
5. “I would rather have…”
Another form of the “At least you don’t have…” is the “I would rather have…”. I have heard POTS patients in the past say things like “I would rather have cancer.” While I think (or hope) that most of them meant they wished they had a condition that has more research, advocates, and visibility in the media, this is still a massively insensitive thing to say. For many people with cancer it is the hardest thing they have ever been through; they wouldn’t wish it on anyone. For you to say you wished you had it trivializes their struggle. So instead say, “I wish my condition was more visible and researched.” Come on guys.
6. Attack someone who is trying to understand/help
I see this so often. Someone will post to the group with a question and people will answer with their experiences or opinions. Then everyone jumps down each other’s throats. Experiences and opinions shouldn’t be attacked. Seeking information should not be attacked. Differences in opinion are okay. Just stop attacking each other!
We are supposed to be supporting each other. I know in a group I am part of multiple threads have been taken down due to the animosity in the comments.If everyone stopped saying these six things to each other we could all get along perfectly!
Just keep in mind that we are all different and experiences won’t be the same. Don’t compare experiences or assume they have been similar. Support each other! It is kind of the entire point of a support group.