POTS Update: I haven’t posted much in this goal because there isn’t much to post. Though I’m trying my compression stockings and a new med, they don’t seem to be helping. I see my specialist again in three weeks. But that’s not the reason for this post…
One of the hardest parts of dealing with my illness is the isolation (for lack of better word) that I feel; being different from everyone else I know, having this condition that no one’s ever heard of or that they don’t believe is real, constantly having to explain myself to my family and friends, and watching people walk out or write me off.
Lack of understanding is a big struggle. Not only does it keep me from having support from family and friends, but there’s a huge lack of understanding in the medical community as well; which is why it’s so underdiagnosed, lacking in research and information, and why there are so few doctor’s who’ve even heard of it, let alone can treat it. Hell it took me three years to get diagnosed.
The mind blowing bit:
My POTS specialist gave me a dvd the last time I was in her office that explains POTS and what life with it is like. She asked me to show it to my family; which I haven’t done because they scoffed at it when I told them about it.
Last night, Z and I decided to watch it.
It was…well, there’s no other way to describe it than ‘mind blowing’. It was purely informational, but it still reminded me of a great movie: it made me laugh, it made me angry, it made me feel understood as well as educating me. It made me cry.
Even more so, it evoked all of those things in Z too. There were times when he reached over to squeeze my hand because this was me. It was everything I had gone through and was going through. Everything we were going through. Everything we had been trying to tell people.
When it finished, I looked at Z and he told me that everyone needed to see that dvd. We’re going to get our hands on a few more copies and send them out.
Right away, Z said something that surprised me and brought me to (happy) tears. He said he wants to send one to my former best friend; with a letter telling her that this is a real thing and asking her to please watch it. Even if she doesn’t watch it, I was incredibly touched that that was the first thing he thought of. It was the first thing he said when the dvd ended; “I’m sending one to C, she needs to see this.”
She told me I was too ‘flaky’ and didn’t believe I was really ill…so she stopped taking my calls/texts/e-mails, etc. It really broke my heart.
He wants to show it to his family, send one to my dad, have my mom and sister watch it, and send one to my grandma. He also wants to have his cousin (the jerk) watch it. (I highly doubt that will work, but I appreciate him thinking of that and taking it so personally.)
Z also is going to ask his roommates to watch it. He wants as many of the people that I come in contact with to see it because, in his mind, the more people who have some sort of understanding of what I’m going through, the more comfortable I’ll be. He’s right. I will feel a lot more comfortable going to family functions (or hanging out with his roommates) knowing that they at least know what’s going on when I have to leave, or when there are days that I’m just too ill to attend; and it will mean I don’t have to constantly be explaining myself. It will help me to feel less guilty and ashamed. Less like a freak show.
Like they said in the DVD, POTS can be just as debilitating and life affecting as Diabetes or MS or cancer (not fatal though obviously- and their words, not mine so don’t take my head off please) but because people know about those conditions they’re more willing to be understanding and make exceptions.
We’re also going to do something that may just piss off my GP. We’re going to ask the POTS doctor to send him a copy of this DVD with the request that he watch it. It won’t help me, but it may help someone else…and it may get the not-so-subtle point across that this isn’t just a “suck it up and deal” situation.
I don’t now how many of these people will actually watch it, but Z is very passionate about getting it out there. He feels it’s important. I feel it is too. Awareness has the potential to make my life a bit easier. It won’t help me physically, and it may not even get me the support I’d like/that I could use, but a little more understanding has the potential to go a long way.
I wish I could upload it so that people here could watch it if they wanted to…but that would be copyright infringement and I don’t fancy going to jail!
However, I am going to go out and get several copies. So if anyone would like one, even just out of curiosity, please let me know and I’ll be more than happy to send one out. Happy to spread awareness :)