By Marjolein on Friday, June 02, 2000 - 12:58 pm:

Hello, I come from Holland, I'm 18 years old and have vibro-myalgia and EDS. My cousin (also my best friend) has also EDS. She has the same problem: Everyone
makes jokes about this. When someone shakes my hand they sometimes say "Öh now her arm will fall off". or something. Some of my good friends do take it
seriously, but the others are just making fun of it. Or they say "When you fall of the bike you'll be lying on the ground in thousand pieces." First I laughed about this
jokes, but not anymore. They do not understand that I have pain all day long. And that I may not do anything except walking and biking. I've played piano for ten
years now and now it hurts too much to play any longer than 30 minutes. Maybe I can't walk when I am 30. hahahahahaha...?
That isn't funny. Do the people here recognize this problem (or that they think that it isn't that worse and you just say it because you don't wanna sport)? I wish
everbody here a lot of succes. bye!

By TJ on Friday, June 02, 2000 - 12:58 pm:

I'm sorry people don't take your pain seriously. It's easy for people who don't understand to mock or dismiss someone's pain because they can't see an obvious
outward physical cause. That's why so many people with chronic pain are treated as hypochondriacs when they go to the doctor! There are a lot of people who
actually understand how you feel, so don't let other people make you feel bad or uncomfortable because of their ignorance -- maybe they could learn a thing or two
from you!

By Gwen on Friday, June 02, 2000 - 12:58 pm:

Marjolein, if you read postings on this bulletin board you will find that not being taken seriously is one of the major difficulties encountered by people with
HMS/EDS. Maybe this is less so for people with EDS once they have a diagnosis, but I don't know. Not being taken seriously startswith the attitude of the medical
profession because HMS doesn't show up on X-rays, cat scans or blood tests. It tends to be a diagnosis of exclusion. Once you've eliminated everything else then
you maybe start thinking about it, if it hasn't already been dismissed as being a psychiatric problem! It has always been my understanding as a nurse that pain is real
and complaints of its existence should be acknowledged. In fairness to doctors, however, I must say that the difficulty lies in that grey area where one suspects
complaints of pain are being utilised by drug seekers and abusers. The people I have contact with who have EDS/HMS generally don't seem to take much in the way
of analgesics, mainly because we've found they aren't particularly effective. But to get back on track again, I believe people mock what they don't understand rather
than admit their ignorance. How do we educate them? Bulletin boards like this, greater visibility, public awareness campaigns? I think maybe we could take
example from the gay community's campaigns to make themselves visible and accepted. Gwen

By Marjolein on Friday, June 02, 2000 - 12:59 pm:

Thanks for the reply on my letter. It's true that they make fun about it because you can't see it. Also what you can see is that p.e. my fingers are very hypermobile and
so sometomes they look a bit weird. But as long as the doctors say that it's not "in my head" I am ok with it. I know also that there are a lot of people who do
understand this problem and it is much better than 10 years ago. Well, I gottta go now. Bye. Marjolein