I don’t know why I do this to myself. I get to a good positive place, I have a little relapse, and I lose all common sense. Life with POTS Syndrome is just like everything else. There are good days, and there are bad days, and there are days in the middle. My issue is that on the bad days, I just can’t get out of my own way. On the bad days I want support, I want to reach out to other people in my position. I want someone to share the magic tip, the piece of information that is going to cure me forever. I know it’s not going to happen, but that’s what I start to look for. I start trolling the internet for support groups, I join groups on Facebook and I dive head first into the great depressing black hole of “support”. These groups are FULL of people who are complaining. They are reaching out for support in their moment of frustration, just like I am, but the responses are SO NEGATIVE it makes my skin crawl. “I’m sorry you’re feeling that way, try being me and being on year 30 of this.” “You just have to accept the fact that you will always be this ill.” “People who think a positive attitude about this will make any difference are just crazy.” Those are actual posts I read this morning.
I know these people are sick, and tired, and they are sick and tired of being sick and tired! I feel their pain. But SERIOUSLY?! I want to create a support group full of people who will be there to talk about the horrible days, but who will support and generate hope for each other everyday. I want to be the president and CEO of the Positive People with POTS Syndrome Association (patent pending!) Anyone battling a chronic illness knows that falling into a depression about it just happens sometimes, but these people are just making it harder on themselves and harder on those of us that are trying to reach out for understanding. I’m not asking for people to sugar coat things, and I don’t want to be fed a bunch of lies, but there is no need to tear other people who are sick down…that’s just wrong. I have a wonderful group of family and friends that will listen to me talk about this illness until I’m blue in the face, but that’s not the same as talking to other people who are in the same boat. That what I feel like I’m missing. I want to find a postie BFF who can laugh and cry with me…and who will always maintain hope that we could get better. Is that too much to ask? I think I’ll put an ad in the paper…Married White POTS Woman Seeking POTS BFF…I feel like I will get two very different replies: