Mini vent: There’s a support group I belong to, and the vent I need to make isn’t very supportive. :p Frequently people in this forum complain about the lack of government funding towards Fibromyalgia research. There are frequently petitions that are essentially and literally only “Fibromyalgia Awareness should be important! Get the word out!” and then 8,264 people sign that one while 2,937 more sign one that says, “Make the Government Aware of Fibromyalgia! Make the Government Support Fibromyalgia!” and every single one of them are angry.
The most recent post that tipped my kitten was:
“THE GOVT CUT THE FUNDING FOR YOUR DISEASE TO $0. GET MAD.”
Well… what I WANT to say is:
Don’t rely on the government. If you want funding to go to the right places, to the independent scientists that are invested in the research for Fibromyalgia or Autism or Crohn’s Disease or Alzheimer’s Disease or anything at all that you have an interest in then you do the research to find out who can be trusted, who is legitimate and taken seriously in the scientific community among their peers, and you donate to them yourself. Don’t invite the government into your home unless you have no other choice.
Fibromyalgia awareness and acceptance isn’t something you petition for. It’s something that you talk about. You educate people about. You create noise about it. You advocate regarding Fibromyalgia, and you self-advocate. You share information and research from peer-reviewed scientists and get your doctors involved in the discussion.
The government IS AWARE of Fibromyalgia. They’re not ignoring it. In fact, there was this huge announcement back in 2012 about Fibromyalgia being added to the list of recognized disabilities eligible for Social Security Supplemental Income (SSI) and Social Security Disability Income (SSDI). That’s a big fat statement right there that the government recognizes and accepts Fibromyalgia as legitimate.
Finally, if the government cut funding to NASA, who is responsible for things like better mattresses, coats, boots, and many other social advances that make us happy, the government sure as hell isn’t going to fund Fibromyalgia research.
I’m not going to get mad. It’s not that I don’t want the funding. I think it would be fabulous. We need it. We just need more discussion and education and advocacy out there and we need to do more than create silly petitions that only rile people up and don’t accomplish anything real.