How do you explain HMS to colleagues/friends/family??

[ombili]

Oh yes - this is slightly off topic, but I had this experience this morning that seems to happen often as a result of my taking some of the strategies mentioned here. It's kind of funny but at the same time I don't get it. Tell me if this rings a bell:

I will have told someone more or less about the problem; maybe I make light of it, maybe I explain it - in the end, what happens seems to be the same thing, exemplified by my conversation with my Dad this morning: in an effort to be caring, I guess, or who knows what, he said, "So how is your leg?" People seem to just randomly latch onto one body part and ask me how it is. Three quarters of the time I'm not even really sure what they are asking me about. I mean, which leg? Which part? What...? So I just said, "It's fine." But I find this hilarious and odd.

[Sandy L]

I recall reading years ago, perhaps in Conan Doyle's The White Company, that if there is more than one way to interpret a coat of arms, one always shooses the nobler or noblest. That may be helpful in reading people's seemingly stupid comments. Mostly they mean well, but are clueless. Depending on circumstance, you may wish to ignore the offensive interpretation entirely or you may wish to educate them on what is going on.

And yes, Hannah's outline is superb.

[Blaadyblah]

Ombili, I just hurt myself laughing at that - so true! My elderly neighbours are particularly good at that one, but not neccesarily at getting the right body parts with the result that I can never tell if it's me thats forgotten what I'd hurt last time I saw tthem, or them!

I usually answer with "I'm still broken"

[roqchiq]

This is a very interesting and timely thread; I've just decided that I need to write some sort of letter for various friends to explain what's going on with my health. I also have CFS/ME and have just had a relapse so am coping with the 'hope you're better soon' comments, as well as the people who don't seem to register that you can have more than one thing wrong with you at a time and say 'sorry your knees are bad again' when they're actually pretty good at the moment

I think the suggestions on keeping it simple are a good idea. My first draft is a bit medical so will edit to say how the conditions affect me in particular. I've told some friends bits and pieces over the years but I think it will help to have all the facts in black and white so people can piece things together a bit more.

[Englishgremlin1]

I can understand Ombili point very easily - Which leg do they mean -

I tried the "its all the bits connected to it that are the problem" line but that was not a success. Now I just smile sweatly and say "still not fallen off!"

Most people have no concept in there head of illness that won't kill you, yet cannot be cured. If the questions are sympathetic and from real concern I think, like Sandy, that it has be treated that way. Most people are OK but just not equiped to discuss it.

the thing about takin time I find the best - the ones who work closest to me have over the months come to understand the effects a lot more by see how I cope or do not cope with things.

[rainbowbrite]

YEY! I did it and I feel so much better, thank you so much for your comments.

I said, "I think it's about time I explained what is actually wrong with me because I'm sure it makes you feel awkward not really knowing (cos they knew something was wrong but didn't really understand) and I feel it would be best for both of us if I allowed you to understand...

"I have Joint Hypermobility Syndrome, it means my bones aren't stuck together properly and my joints aren't supported properly which effectively makes my bones wobble around (maybe not the best way to put it, but thats how it came out) it causes my body to be in lots of pain"

"I manage to cope with the pain most of the time, but sometimes I find it very difficult, it is the times I find it difficult when I may miss work"

I then explained that when I am finding it difficult to cope with the pain I also find it difficult to discuss the way I am feeling, therefore when they ask how i am feeling i may give short answers, this is not because I don't appreciate you asking, it is because I am scared I will cry.

It was that easy. And I think she actually got it.
Now at least I know someone else knows, and when she asks how I am/I phone in sick I can explain to someone who knows.

I know not everyone will be this easy to explain it to, but it has certainly helped my confidence to tell others.

Thanks again for your comments guys...

[flo]

Well done you!
flo

[flo]

Well done you!
flo

[hannah]

Well done! you are helping to educate the world

[sarahmay]

I have to add to this.

I always have the one where people think they are being helpful by suggesting I take Cod Liver Oil, or vegetarian alternatived, because it's in my joints this'll help.

It's very frustrating, you think you've got it across that you're somewhat unstable and it hurts and all they can think of is arthritis.

Sarah

[lucienh]

Cod liver oil, or magnets, or acupuncture, or more vitamins, or massage. Rather than say "I've tried them all, and some of them work sometimes," I just thank them for their concern and thoughts. After all, if someone knew something that really did work and didn't tell me, I'd be furious.
But the HMS is hard to explain. When I first got the diagnosis I was so excited to know that I had a real condition and it wasn't all random stuff in my head that I found myself giving everyone around lectures on HMS. Far more than anyone wanted to know. Now I just give the minimum and it seems to work as well.

[loosebones]

My sister and her boyfriend keep on calling me a cripple and it's really getting to me - what I would like is suggestions for how to explain to them how it feels without shouting or getting upset over it. I'm not the most tactful person...

[Retro]

Hi LB,

There's a good letter for friends and family on the main site .

Lindsey

[Sez]

I just wanted to add that I've finally read the Spoon Theory, and I cried! It completely rang true, so I have started explaining the idea of "spoons" to my OH (although it's seriously preaching to the converted - he knows almost as much about EDS as I do!), and will use it with others in the future.

[naama]

I think the ideas discussed here are excellent. I totally agree with the explaining after the event when I'm not emotional. I'm going to write a 'how things affect me' letter which will be easy enough for my colleagues to understand. Any decent doctor, i.e. Dr H and my rheumy, will understand it even though its not in medical speak. I'm going to discuss with my rheumy next week how to explain to a doctor who knows nothing about EDS the fact that I can be in considerable pain but not bouncing off the ceiling, screaming and carrying on.
You never know, it might even be helpful for me to acknowledge to myself how things affect me!!