October 2011
September 2011
I would like to state that this “Letter to Normals” be used to help other people with FMS as long as proper credit is given to Bek Oberin (Bek wrote the Open Letter To Those Without CFIDS). This letter was modified (with permission) and published by Paula Payne in 1996 to become the “Letter to Normals”
A Letter To: Normals
Having FMS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident , most people do not understand even a little about FMS/MSP and its effects, and of those that think they know, many are actually mis-informed.
In the spirit of informing those who wish to understand……
These are the things that I would like you to understand about me before you judge me….
- Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
Yes, Fibromyalgia is considered a syndrome. This means that it is characterized by a cluster of symptoms that consistently occur together. While the definition of disease is this: A disorder of structure or function in a human, animal, or plant, esp. one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury.
The reason they call Fibromyalgia a syndrome is because they don’t know what causes it yet. The issue that I, and many others, have with the term syndrome is that so many Doctors and people in our lives think “syndrome” is synonymous with “not serious” so when they hear Fibromyalgia Syndrome they dismiss it. I can’t tell you how many times I’ve heard, “It’s just a syndrome, it’s not a disease.”
What they do know about Fibromyalgia is that it seems to come from a part of the brain working incorrectly. Now, look back at the definition of disease. With the knowledge that in Fibromyalgia patients a part of the brain is not working correctly, I think it’s safe to say that Fibromyalgia is a disease by definition, wouldn’t you?
In addition to all this, many Fibromyalgia associations and groups such as the NFA have been working on getting the medical term for Fibromyalgia changed from Syndrome to Disease because of all of the discrimination we receive because Fibro is currently identified as a syndrome.
So what do we call it right now? I say fuck the syndrome shit. Those of us with Fibro know what it does to us, how terrible it is, and that it’s more than “Just a syndrome.” So if you wanna call it a disease, then do it. I do and will continue to. By definition it is a disease and just because the medical world isn’t quite ready to recognize the seriousness of this illness doesn’t mean we can’t.
Michael Wulff discusses how games that allowed him to customize his character helped him understand his sexuality, and enabled him to be comfortable with it in the face of extreme prejudice.
This reblog is only partially because of the gay!Bully memories…
“It’s going to be a pretty rough ride, kiddo. I know you’re starting to figure that out, but you can handle this. Always keep your head up. Enjoy what you have while you have it. And when you can’t even do that, just keep going.”
DEAR ACE COMMUNITY,
So. I have. Exciting news. Potentially?
I was talking to Bob who helps run Stand Out Youth, a youth LGBTQA group in Savannah, Georgia that I’m a part of, and I asked him if he knew anything about getting spaces started because I’ve really been looking into how to start a…
This sounds really amazing, awesome job!
Ahhhh fantastic!! ^___^ We…may or may not be doing something similar soon in NYC but shhh…don’t wanna jinx it…
*knocks on wood*
DEAR ACE COMMUNITY,
So. I have. Exciting news. Potentially?
I was talking to Bob who helps run Stand Out Youth, a youth LGBTQA group in Savannah, Georgia that I’m a part of, and I asked him if he knew anything about getting spaces started because I’ve really been looking into how to start a…
This sounds really amazing, awesome job!
