By Jessica on Friday, February 15, 2002 - 05:30 pm:

Hi - I'm looking for a bit of inspiration as to how to describe HMS. I was told by someone who knows me very well that it is clearer what is going on with me when I just say what I can and can't do in very clear terms. Such as - I need to sit down now, or i can't run for that bus - however, that only seems to work with some people and certainly only when they are sober! I went out this evening, and despite the fact that everyone knows (and hears) that my hip is slipping out of the joint all the time, they took my seat when I stood up, walked so fast down the road i had to call them back several times and told me I was boring as I would not dance. I understand that it is hard for them, I don't exactly look ill either and have no stick as I was told by the physio to try without for a period so the muscles have to work harder, so I understand how easy it is to forget - but how do others describe HMS so that people listen and you don't have to spend the whole evening talking about it. I don't blame my friends, I think it is me that needs to learn how to explain it better - any ideas?

By Sharon on Friday, February 15, 2002 - 06:32 pm:

Jessica,
I tell people that I was born with a condition that causes chronic pain and constant uncontrollable dislocations and subluxations anytime, anywhere any how? It is totally uncontrollable and it hurts. That I am not using it as an excuse; it is just something I was born with and have to learn to live with. I am not a whinger but when I say I Have to do or not do something I mean it; it isn't because I don't want or do just want to but because I can't or must (depending on the thing) to reduce my pain or to stop something going "out" or to put something back "in"..
Hope this helps

By bree on Friday, February 15, 2002 - 10:04 pm:

Hi Jessica,
It's a tricky one, isn't it - you never know how people will react to pain. I get a lot of different reactions to my HMS. Some people understand it, and take it into account without making a big deal about it. But a lot of people I know just can't get their head around the fact that I'm always in pain, and yet I still get out of bed and try to do as much as I can. Either they can't fathom it, or they forget. With the people that forget, I find that if I explain my situation once - usually something along the lines of what Sharon says - I only need to remind them. I just say that 'my hip is crazy today', or that 'I'm a wilting flower', and that seems enough to remind them what I've said about HMS in the past. I've also found that some people find it easier if they can translate my symptoms into a disease they know about - for example, a lot of people at my uni are keen to think my HMS is 'something like arthritis'. They don't get HMS at all, yet thye understand about me not being able to run, or go down stairs, etc. I just got a new psychologist at the pain clinic I go to this week, and she's saying she will help me learn to articulate my symptoms more clearly. I'll let you know if she come up with any good ideas.

By Jessica on Sunday, February 17, 2002 - 12:04 pm:

Dear Bree and Sharon - thanks a lot both of you - Sharon I will try those ideas as I haven't put it in those terms yet. Alot of people I have most problems with know that its only been an issue for the past two years as before I had no pain - however I think saying its uncontrollable is really good. bree - I would be really grateful to know more about what your Psycologist says - I'm glad you found my excercises useful I've one more for you - I've put it on the other page under clicking hips in case anyone else might like it too. thanks for your help - this advice is invaluable - jx

By Linda on Monday, February 18, 2002 - 12:39 am:

Hey everyone!! Any ideas on how to deal with insensitive strangers. I find the biggest problem is getting evil looks when I get out of my electric wheelchair and don't limp and look perfectly healthy. People will yell at me saying why am I in a wheelchair if I can walk so well. Or just sighing at me when I ask for help doing something. Any ideas on any shortest and simplest answer. It seems that whenever I just say my joints dislocate they look at me perplexed. thanks! you guys are great!!! Your last letters really helped!!!

By Jessica on Monday, February 18, 2002 - 02:22 pm:

Hi Linda - I don't know how to stop it but I do know the feeling! I sometimes walk with a stick, but its a collapsable one, so that when I'm good I fold it up and when bad take it out! Its good as the stick acts as a signal something is wrong and people can be much nicer because of it - but then if I suddenly put it away they think I have been making it up (or is it me that thinks they think that?!) I have been tutted many times, particularly if I sort of hop/skip with it to catch a bus - even though I'm going ooh aah with each step! A friend of mine has MS and gets exactly the same reaction with her wheelchair usage - just an idea but have you asked any MS sufferers how they cope, coz that is a comes and goes illness too? She suggests making the illness sound its most technical as most people then go "aah"!! - best wishes - Jx

By Sharon on Monday, February 18, 2002 - 03:00 pm:

Well guys this is the problem with an "invisible" disability, people just don't understant that because we have 2 legs and are not paralised or old that we may need to use assistive devices sometimes. Just tell them when they do ask that you have a genetic disorder no more no less, they can they make up there mind to ask more or accept it , things like Muscular Dystrophy are genetic too and in early stages aren't constant in there symptoms, so I just say "look I have a genetic disorder that makes it hard for me to use my body properly, and causes chronic pain" or just " I have a genetic disorder" and leave it at that. and for jessica I too know that feeling people who tend to see me frequently but don't know me like the supermarket checkout chick etc are always with the what is wrong today as last time i came in i was in a sling now i am limping or using a crutch etc so I tell them that my disorder can make my body dislcoate anywhere and with the smallest of movement. Kind of what i said earlier.
I really hope this helps. the one I truly hate is that i use disabled parking areas, because of my walking problems but i dont use a cane or crutches very often but do use braces on occassion, so i get the you can't park here deal, you aren't old or disabled, so i say actually I am disabled and when you show me your medical degree i will describe my medical condition (this to those who start really yelling at me. and then just walk, limp, shuffle off. this last only comes out on those rare occasions where somewhen in really abusive and yelling at me etc, even though i have a disabled persons label on my car.

By katy on Thursday, February 21, 2002 - 12:40 am:

Have you seen the 'letter to my family' at
http://www.hypermobility.org/friendsnfamily.shtml

By Margareth on Thursday, February 21, 2002 - 05:29 am:

I totally recognise the issue of being judged by the number and sort of assistive devices you use. I too get angry looks if I stand up from my wheelchair to stretch or something. Or when I go somewhere on my crutches instead of in my wheelchair for once because I have a good day, or because it is hard to take the chair there and people come up to me and tell me how glad they are I am so much better now and how happy I must be to out of that horrific wheelchair and then they ask me when I'll be working again, when I will be able to get rid of the crutches too, when...
I used to feel a great need to defend myself against this prejudice, to tell everyone I really was disabled, to try and prove my limitations, to explain my syndrome to everyone... Untoughtful remarks used to really get to me.
I gave it up. I don't do it anymore. Judge me if you like, it's your mistake. As long as the people close to me know what is wrong with me as long as they believe me I don't care what the man in the street thinks. I know who I am, I know what my syndrome is like, I know what I can and can not do. Sometimes I can still be really hurt by what people say, but I try not to be.
Most of my friends and family understand me now, and if they don't I'll explain it once again. I particularly like my brother-in-law's aproach to the getting up from your wheelchair issue. When I get up from my wheelchair in public he sometimes shouts out: 'Yeah, Margareth is gonna perform another miracle!!!'
I love his light, funny and respectful reaction!
Thanx David!

-Margareth

By Linda on Tuesday, February 26, 2002 - 12:33 am:

Thanks so much for your responses guys!! I feel so at home here. I had to ask someone to open the door for me at the gym cause my elbows and hips come out and the jerk pretty much refused  and said " what? you can't open the door! What a ******!! I said to him that I would rather have him give me a look than suffer with elbow pain for the rest of the night. Though this is exactly what does me in. I end up hurting myself physically in lieu of getting psychoogical ramifications asking for help. But
I really chose to let the lazy sucker's response roll off my back. I am through giving energy to strangers. It's over so no use thinking about it. My joints heal faster when I am being positive and not dwelling on the negative. Take care everyone and feel free to email me. you guys really made me feel so much better!!

By Bianca on Saturday, April 13, 2002 - 09:01 am:

What to say is a difficult question and it depends on the situation.
Sometimes I can take it with humor and tell people "that I took out my joints from the wrong box when I got them before birth."
What I found to be a problem is that when I try to explain what hypermobility is I tried to explain the hypermobile range of joints and then there are so much hypermobile people, too. I get 2 reactions from them: one think that I am crazy because they never had any problems and the other get afraid to fall as ill as I am.
Sometimes I tell them taht I have "Schlotterglenk" the Swiss German Word for it, means whobbling joints. This is a well known condition here and then I tell people that it is not only about overstretching your ankle but also about early degeneration of joints- and that a lot of people understand.
But I find that it keeps difficult to tell the right thing in the right situation.

By Michelle on Sunday, April 14, 2002 - 03:39 pm:

Hi everyone, I'm new to this site and have just been diagnosed with Hypermobility EDS. It's really great to read all your comments about explaining it to people as that is exactly what I now have to do to people that have thought for the last 12 years that I'm a hyperchondiract and majorly exagerating (I'm 21 and have had problems and bad pain since 9).

It's really hard though as it's my right shoulder that slips all the time. I also have scoliosis and will be having surgery for it this summer. Like you all say it is an invisible condition which seems to make it so much harder for people to understand as they can't see it clearly all the time. To be quite honest I don't really understand it myself - I was only diagnosed 4 days ago and am on the waiting list to see a rheumatologist for treatment. I have been told it will be 3-6 months before I can see one, which will be after the operation.

I am really worried about this surgery as it is quite major without having HEDS, PLEASE GIVE ME ANY HELPFUL HINTS OR TIPS YOU MAY HAVE.

I really want to find out all I can about how to deal with this condition and I don't really know where to start. I only discovered I have it because of the scoliosis msge boards which referred me to it.

Hope to hear from someone soon, sorry to go on so
Love Michelle