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

[BendyBoff]

I was also trying to work out the broken letter - guessed P as you wrote individual instead of people! Can you tell that I used to be a teacher??

xxxx

[ali]

hi i hav this problem,being recently diagnosed aswell i am strugglin to understand it myself,but i hav came up wiv a new theroy with the help of a friend,i waas thinkin i would write them a letter sayin i am no different to them apart from my joints fall off now and again and tht i get alot more tired easier than most(actaully tired now,zzzz)so keepin this v short.
but i also thought mayb givin them a link to the website and also gettin them a book about the condition mite help.im about to order one,hopefully,(if i dnt fall asleep by then)

[Julie]

Hi
(Sorry if this is in the wrong place or ties into another post, i searched but couldnt find anything)

Modnote: Merged with existing topic, located on the front page of the Social Issues forum.

This may sound strange but how do you tell your family about your HMS?

I only go back home at christmas the rest of the time i live with my other half, i was diagnosed over a year ago and i went home for christmas last year and my OH came with me and helped me when i needed it, this year ive deteriorated alot, my pains worse and my OH isn't coming with me.

My family have always just said im clumsy, i dont think my family understands about my condition, its like when i sublux my hip i tell them about it and its the "what are we going to do with you, your just going to have to be more careful and less clumsy" and this time when i go home ive got special grip cutlery, kettle tipper etc all things so i can be more independant and im not sure how my family will react, any advice?

[loosebones]

Hi Julie, if you have a look on the main website, there is a section on how to tell friends and family and loved ones. I'll put the link in for you http://www.hypermobility.org/family.php so you can have a look. Another thread is http://www.hypermobility.org/forum/viewtopic.php?f=7&t=5591

Hope they help and you can find a way to tell them.

Modnote: Thanks LB

[hannah]

Or you could try my book! "You know you have HMS when..." has cartoon stickman pictures illustrating many of the aspects of HMS (falling over, easy injuries, trouble walking far etc.) and some people have found it very helpful to show other people because then they can absorb the information at their own pace, and because it isn't 'medical' it is a lot less scary and easier to understand for them

see my signature for a link. £2 to the HMSA for each sale.

Sorry for the sales push, but honestly many people have found it really useful - I use it too - carry one with me all the time to show people who struggle to understand. even people who know me fairly well and know how disabled I am found it very useful too because they realised a lot of things that they hadn't picked up before.

H

[loosebones]

Hannah, I was about to suggest that too. There are also some poetry books called 'Behind the Mask' and ......another one I can't remember the name of. Also, there are leaflets on the main website that you can ask for; they explain in terms that friends and family can understand - maybe thats an idea too? Anyhoo, hope this helps.

[lynod]

My son went to the Russell Howard gig in Cardiff last night and told me that the support act, a guy called Steve Hall, did part of his act about Ehlers-Danlos (apparently he has it), talking about stretchy skin and showing how he could bend his hand right back. Has anyone else seen this and do they think that this is a good or bad way to bring it to the attention of a wider audience - apparently lots of the Russell Howard tour dates are already sold out so lots of people are going to be finding out about EDS for the first time.

[brenniesplace]

I worked at a Hardware store for 22 years and know most every one in town. I had back problems and sugery and finally left my job (that I loved) because I could no longer do the work due to pain and fatique. I wasn't diagnosed until 2 months ago. After all my joints started flaring up. When I see people at our local stores they ask "whats wrong with you?" or "why did you leave your job?" I don't know how to briefly explain this disorder that lets them know what this disease is. I've also become upset when people who know nothing about this try and give me advice or comments like," go to therapy & get back to work", "try jogging", "take vitamins" or "I'm tired & ache too, but I have to work" "It must be nice to not have to work" "What do you do all day?". Even family don't understand sometimes. They know I'm ill but I can still get things like "But your still going to make it to my party right"? So I need a way of telling people without going into a long detailed story but still informs them to what this is like. Thanks for any help. Brennie

[Stone]

I normally start with 'I have a genetic disorder, all my joints are knackered' and judge interest - if they look blank I leave it at that, if not I explain in more detail. I think it's very hard to get across all aspects of it without looking like some sort of massive slacker though!

It got a lot easier to explain when I started wearing splints more - almost as if the NHS giving you stuff validates it. Ridiculous but that's how a lot of people's minds work so I just put up with it

Stone

[l00pyp0u]

I have what one of my adopted kids calls, rubber bones. By that I mean I bend my index finger back and it curves beautifully, backwards, at which point most people go green Its a great way to illustrate whats wrong if you have bendy fingers, and then I say all my bones do this, and either they go greener and run, or ask intelligent questions,
For me its that simple, btu if you can do it try it, and be prepared to snigger to your self

Lou

[lil_miffy]

Sorry for the huge post.

I feel that my freinds do not understand how bad hms affects me. I only see people on good days. bad days i am stuck in bed and refuse to see people becuase i dont have the energy to chat or be social. So none of my friends have seen me on a bad day and now that good days are rare now, this means my friends have not seen how much i struggle.

I was unable to take the teaching job my friend offered me at her music school as a result of how bad things are now but i voluntarily teach a coupl eof students that i had started to teach when i tried working for her. In order to teach for one hour a week i have to stay in bed on the wednesday and rest as much as possible. i then rest right up till i have have to leave to go teach then come straight home and usually have to go straight to bed where i fall asleep and usually sleep right through the following day and wake up on the saturday.

I have had to rearrange lessons a couple of times to different days becuase of hospital appointments but make sure now that i dont get appointments on thursdays. Unfortunatly i have to have my wisdom teeth taken out this week on thursday as the only dental surgean in the area with expereince of hms/eds can only fit me on that day. It was felt that it would be too risky to have it done by someone without expereince of hms unless i went into hopsital and had it done under general anesthetic.
I explained this to my friend and in my usual way tried to expalin it but kept positive and made a joke that i wish i had a simple condition rather than one with so many complicatoins.

But i felt like she felt that i was just being akward and i felt like at that point she was thinking 'what is so bad about your condition, you always seem fine when i see you'. (for an hour once a week)

My friend has gone on holiday for a couple of weeks so me and the other teachers are covering her lessons as well as her own. I only had 3 of her students to cover. but when i told her about the dentist appointment and that i couldtn teach on the thursday i epexcted her to say 'try to rearrange but don't worry if you can't' Instead she said i had to rerrange the lessons rather than cancel them. Iv managed to fit one of her students in on tuesday but the other two have said they will just leave it for this week. my student has also said she will leave her lesson this week as she cannot make it on the other times i am free.

Im worried not that when my friend gets back from holiday that she will think i just couldnt be btohered. Im worried that she thinks im not taking the job seriously(and remember im not getting paid to do this).

I feel like its my fault in a way becuase she offered me work a number of times in the past and each time i said i would do it but then changed my mind when i sat and thought about whether i could cope with the work or not. When she asked me again this time I said i would do it and wrote her a huge email explaining that in the past i had said no becuase i couldnt accept i couldnt work more than 16 hours a week. (I wanted to get off incapcity benfit) but now i know that it would be impossible for me to work at all as even if i am having a good week, i cannot commit to working becuase i cannot predict how each day will be. In the email i went on and on that i wouldnt change my mind and that this time i would make it work so i started off with a couple of hours on monday and thursday. After just a couple of weeks i realised that ijust couldnt do it as i was spending every day in bed exhuasted just to teach for 2 hours twice a week. So i told her i would just teach on one day a week. At this point i was trying to get the Shaw trust to help me get set up working as the nature of hte job means i would be self employed but they told me they couldnt support me or offer me any help if i didnt work more than 8 hours a week. The job centre has not been able to help me in the past when i looked into doing the same job self employed so i realised at this point that i would have to get set up and manage on my own.
After another week i realised that i was struggling to teach just 4 students (half an hour each) so i explained to my friend that it was pointless doing it for work, that i couldnt do it as permitted work as with permitted work you an only do this for a year then you have to work more than 16hours after a year. I realised at this point i could never owrk this amount of time so i asked her if i could just do it voluntarily. She said yes but i feel like she thinks iv just changed my mind and dont want the job.
She has offered to give me a free singing lesson and piano lesson each week in exhange for my voluntary teaching but not only would this been seen as recieiving payment so would be illegal, i wouldnt be able to cope with an hours tuition for myself then an hour teaching my 2 students.

I know she has been stressed lately as she has just moved the school into a new building so she is skint now after all the costs and has also taken on another 2 teachers. She was also stressed at trying to arrange her cover while she was on holiday.

Its impossible for people to see how bad hms affects me day to day, even if i tell them what i can and cannot do its hard for them to understand becuase hwen they see me i have my 'im ok' face on even if im really struggling inside. Also in order to see people i have to rest so much before hand and usually spend the next few days in bed exhuausted, which they do not see.

My friend knew me before the hms got bad. I met her when i went to her for singing lessons and we developed a friendship as a result. at that time i was walking fine and didnt have any major problems but my condition has deteriated so much in the past couple of years that i don't know how much people believe now.

I dont want to bring it up as im worried she will think im just making excuses. I think im just going to be more open about how im feeling when she asks how i am when i see her but i dont want to come acorss that im just moaning. Its hard for people to understand the level of pain im in or to understand that im usually running on autopilot just to get through the day.
Im worried that when more new students come for lessons she will ask me to take them and im not sure if i can. But i know that if i say no she will think 'well that email she wrote me was a load of c**p'.

Im starting my driving lessons in two weeks. My brother in law works for bsm so his collegue is going to teach me as he understands my condition through my sister. But he can only fit me in on friday afternoons and as i will have to stay at my sisters the night before becuase of the distance i will have to go straight from work on thursday. Im really hoping that i can manage to teach on the thursday and be ok for my driving lesson on the firday. At the moment i only have one student as my 2nd hasnt come to thier last few lessons and i have been unable to contact them. I think i will be ok if i only have the one student but i know that just going to my sisters and staying over night and then having my driving lesson will really knock me off my feet for a few days.

I can't rerrange when i teach either becuase of when i will be getting the care support from social services plus i also have to fit phsyio and dr appointments into the week regularly too.

I know that my friend is trying to understand but i dont think she fully gets it. i feel like i want to say to her 'come to my flat and stay the full day to see just how bad things are'. It sounds insane but i think the only way she (and the other staff, 1 of whom doesnt like me anyway becuase she is a stage society member and when i left stage they thought i did so in a strop becuase they wouldnt let me join in becuase i couldnt dance), is if prof b told me i had to go into hopsital becuase of how bad things are. Thats the last thing i want and i feel awful for thinking it but i feel the only way people are going to get close to understanding is if this happened.

I know its my fault for not being honest with people about how bad things are and i know that complaing about pain and exhaustion all the time to people just makes them loose intrest so i have to just put a face on and act like im ok when im around people, but just wish i knew how i could get people to understand how bad things are. and i wish i could feel confident that they do really understand.

[Pootje]

I tell what it is about!
And i give them à link with more information!
Sometimes i took pictures with me or show Them my braces!
In holland we have à book thats called learn en live with hms/eds!
À lot of people tellen there story so they ca see i'm not THE only one!
So of THE want i let them read that book!
In Holland we've also a letter it called, hello, i'm hms
verry shocking but it tels how people with hms themselves feeling!

[Lindsly]

Pootje, could we have you translate those books into English?

I've used the HMS and EDNF brochures to help show the validity and significance of collagen defects. Recently when a coworker said, "Look at that finger!" regarding this year's EDNF brochure on the types of EDS, I told her mine could do that too and showed her. I think I told her I could also do the leg and arm things pictured and mentioned the skin (she'd seen me pull mine after asking me about a Dr. appt before). She told me I should march in my manager's office and have her read the brochure . She (my coworker) had no problem understanding my issues were real or serious, though, when I explained things initially without the pictures. I also showed the pictures to a man at lunch who thought Tinkle's book's cover illustrations looked merely like yoga pictures, explaining the difference of natural versus acquired flexibility, and showed him my thumb to my wrist and the drawing of this in Tinkle's book. Too often I show my joints a bit to try and prove this really is wrong with me; sometimes I don't though.

On Facebook I posted an album with photos and and a bit of explanation of the situation. Only some church members, friends, and a family member who said "You always were" when I told her (for reasons I can't remember) I was DX'd as hypermobile, can see the album. Plus I added a few links such as one to an article by Grahame on pain and hyperlaxity, plus photos to a few albums with people like us. That way there's some explanation, validity, it might help them recognize others like me, and I'm not repeating my tricks. I made sure I only showed tricks men could see... not showing the ROM in my hips, for example.

I haven't explained to my manager, supervisor, or many people. And I still can't decide how much, or whom, to tell.

My explanations have, like most of yours I suppose, varied quite a lot. Some of the more vague ones I've quit using (unless something like "I have trouble with my joints") because they don't add much insight or validity.

[Pootje]

I don't know!
I'l have à look And tell you!
What i can try to translate is the letter hello i'm HMS.
If you will?
For the book i going to search if there is à englisch version!

[Lindsly]

Pootje,

Wait! I'm sorry! It was a joke. You don't need to translate any pamphlets (and most definitely not any books). They just sound very nice from the bit you said about them. Is there an HMS/EDS organization or two behind the literature pieces, or where are they from? This organization and http://www.ednf.org/ have some helpful English literature to show people.

As to the "If you will," I'm not quite sure what you're asking.