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

[Fiona-Jane]

i dont know if i'm more approachable at the moment, maybe because i'm happy at work at the moment and quite smiley? but many people have been asking about what is wrong with me. ive worn a brace on my left wrist/hand for several months now but no one asked about it until recently. even the big bosses have been shyly asking me about it.

ive tweeked the way i describe my condition to people, through practicing different descriptions etc and seeing what seems to work the best for everyone involved.

ive found that they seem to understand the condition better if i explain it as simply as possible and end on a positive. i simply say that i have a genetic condition that makes all my tissues (and squeeze my forearm skin/muscle etc to show them what i mean by tissues) very stretchy and weaker so my joints dislocate easily and causes various other problems. i usually get the responce- 'but its curable, right?' and i say 'no, because its a fault with my genetics but it isnt life threatening (i only have EDS 3 with no really serious symptoms) and i does have advantages (ie stretchy skin = less wrinkles) and the physio is really helping to keep me nice and strong so i'm doing ok. and i then comment that HR has been really helpful and reduced my hours so i dont get so exhausted and so have more energy for my physio.

this seems to be working and they walk away smiling, i expect many people are curious about the brace and that they must be a little unsure about asking so if they pluck up the courage to ask me i'mm happy to tell them. i think they are getting more relaxed around me as people are commenting (jokingly) on my boxing/fighting injury (in responce to my brace) its rather funny. one of the managers spotted me the other day, and said- you really must stop fighting in the pub at the weekend! but he said it really loudly so most of the office got involved with the joke. it doesnt bother me as i'd rather they joke about it than be unsure and uptight as it also makes it easier for me to deal with it. when my wrist is really sore a good joke about it seems to make it more bearable). i think as i'm not really bothered by the hms (well i am, but im not letting them know only my friends at work know if i struggle), they just get on with it too.

fi xx

[taylor]

Ok, it's time I asked for advice.

How do I get my family to understand what has been wrong over the years and why I am in pain now? It's not that they are insensitive, but it's like they are just ignoring me or or kind of "looking right through me" when I try to explain. I'm definitely not looking for pity, but at least a bit of understanding when I tell them I need help with something.

My husband is generally a very caring, affectionate, and sensitive man. I tried to get him to read some stuff here that kind of explained things when I was diagnosed a week or so ago. He doesn't seem interested enough to take the time to read it. When I have told him what my problems are (and have been), his reply is "I'm sorry, darlin' ". Yet, he seems to expect me to carry on as usual, even when I have told him that certain movements cause pain. For instance, we will be in the process of moving this weekend, and I simply can't do the lifting I used to do, at least not without paying dearly for it. Yet, I can't exactly expect him to do all the work either. I quit working back in October due to my shoulder. Now, due to my husbands health, he is quitting work and applying for disability. He should have no problem getting it, as he had 5 bypass open heart 2 years ago and has asbestoses. The problem is that it takes quite a while to get it, and we will definitely need income. So, that means I have to go back to work, and quickly. I can no longer do the job(s) I have done in the past. So, what to do?

My kids are all adults. They just kind of look blankly at me, or act like, "Ok, mom, so what else is new?", or " Aww, mom, you're just getting old!" I'll be 44 in May.

I don't want them to think I am just looking for attention. I have always been a strong person, both physically and mentally, so they are simply not used to seeing me down, also both physically and mentally. I don't want pity, just some understanding. I simply can't do the things I used to do.

[vixenmeister]

Hi taylor,

My heart goes out to you - it is not attention seeking it is a real problem. Unfortunately I think may of us have to face this problem with family and friends. It is an even bigger blow when it is those who are closest to us who are seemingly ignoring the situation.
The letter mentioned below might help if you can get them to read it. It took me 6 months to get my husband to read it. He also refused to speak to the people at Chapel Allterton when I was an inpatient there which was embarrassing as well as deeply hurtful
When he finally read the letter he admitted he had been avoiding the issue because he is scared about what might happen.
It could be that your husband doesn't want to talk about it because he feels like this? Also if people are used to you being the strong one they find it hard to accept that your physical strengths have their limits.
On a practical level, I qualify for DLA and use the money to pay a gardener - still to proud to admit I need help with cleaning though. This frees up low energy reserves for other things.

Hope this is of some help.

Vix

[Jess]

I find it hard at work (mainjob) as we have a very hypermobile student at work, her knees will ping out into a straight out in front of her, so will her arms and also has Cerebral Palsy to an extreme form that she will never talk. She has never shown signs of pain so she doesnt have the syndrome.
But because of that many staff think I'm alot like her so they dont bother thinking about my pain. But when I turn up on training days on crutches or on my walking stick or see me outside of work when I'm using shopmobility they always ask whats wrong.

There is only a handfull of staff that will tell me to slow down or take it easy or even to go home when I've only had 3 hours sleep.

But what really does my nut in is when staff say that I have alot of engery because I'm young. (I work with people who are most 15-20years older than me) Ok yes I will be sorting out the clean laundry when they are sitting down drinking their cuppa slowly. I have gulped down the tea and got going cos sitting on wooden chairs do my hips/back in.
I'm slowly teaching the staff around me about HMS not just HM that they know about from working with the child above.

[hannah]

Hi Taylor,

There are a few things I've thought of over the past few days that I thought might be relevant (if they aren't, ignore them)Re. your hubbys reaction:
Men don't respond to hints like women do. I have often observed a female make it completely obvious in a non-specific way that she is struggling with something, only for the relevant bloke to completely miss the point. Because she is talking 'woman language' not 'man speak'. (and vice versa). Having 7 brothers and working in a male dominated environment I have learnt that when I need help, I quite simply have to say 'can you do x for me please,' sometimes adding e.g. 'my shoulder is out.' If I struggle with it they seem to assume I do so by choice - the "if she feels she can't do it she won't do it- obviously" philosophy, whereas I for one am more of an "I'll try it and probably push to far and cause loads of pain because you don't want to help me because even though I've told you my shoulder hurts but you didn't offer to help with the washing". It is a skill I'm having to learn, but it is really helping. It also helps because then people around me can gradually build up their understanding without me having to go over the same ground again and again. a moment by moment approach. You say you just feel you need some understanding, try being really specific with what you feel you need and telling them at relevant times. But remember that seeing you going through getting diagnosed etc will mean they have to come to terms with it too so they might not be able to offer much in the way of emotional support right now.

Getting other peoples understanding will take time. hubby is trying to come to terms with you having this condition and in my experience it is actually more difficult for someone who loves the person with the condition than the person with the condition themself. What I mean is, you know what is going in in you, over time you pick up hundreds of little coping mechanisms to compensate for hypermobile things, and slowly learn how far you can push. You know that sometimes you don't do anything cos you are in too much pain there and then, other times it is a preventative refusal. Also you have probably (at least I did) had the suspicion that you had something wrong for some time (all my life in my case) and are used to a number of things which you never mentioned but which you now know are HM. Other people don't. Before diagnosis you were 'fine' or 'just injured - will get better again soon'. Their world has taken some heavy blows too, so although it is hard and feels very lonely to start with, try to give others time too. and try to just give them little bits of info at a time. Too much and the brain goes into denial because they can't grasp it.

Your family needs time to learn about it. slowly. Not lectures on the complete picture because it is human nature is to turn off as an emotional defense mechanism.

Sorry that was a bit woffly, but in summary - be specific with what help you need when you need it.

[millie]

Found a good info site, its american I think, looks useful for discussing Invisible illness. Don't know how to paste the link though. Its The Invisible Disabilities advocate and it provides info for family and friends about chronic illness.

[Sandy L]

Try adding http:/www. to myida.org/ .

[taylor]

Hannah,

Thanks. I guess I hadn't really thought about it as far as the different ways we communicate. At least I'll have another route to try.

Millie & Sandy L - I think I found it - Haven't read anything yet though.
http://www.invisibledisabilities.org

[ombili]

As I think I said above, I usually don't - but yesterday I had a funny experience with this. I'm not sure what to make of it.

I've started wearing support gloves, and they really, really help with my hands. I wore them at work yesterday and the people in my office asked what had happened and if I had carpal tunnel syndrome. I explained, as briefly as possible, and then one of them said, "Have you thought of trying therapy?" My response was, "Yes, I am going back to the physical therapist tomorrow." He said, "No, the OTHER kind of therapy!"

And this is why I don't explain. Sometimes it's just easier to say it's a fashion statement, I am impersonating Igor, I like to get attention by banging into things, limping, making cracking noises, etc.

But on a more serious note, I do agree that it takes spouses and significant others a while to adjust - and it takes family members forever.

Aside from what has already been discussed, another thing to keep in mind is that for many of us, before we got a diagnosis we didn't feel we had "permission" to "complain" and so we kept things to ourselves. Once we have a reason for our pain and understand the condition better, and understand what we need to do to take care of ourselves, we begin trying to do these things - but to those around us, who didn't hear the silent suffering before, it seems like all of a sudden we have all these problems we didn't have before. Sometimes they even think, wow, now that she/he has a diagnosis, she/he is making up new symptoms! It's hard to understand that without a doctor's diagnosis, many of us just don't say anything about the things that are making our lives painful.
I think, though, that with time and education, the people who love you will come around.

[Eloise]

I had a good experience with a work colleague today. I had explained to her a few weeks ago about my condition and she had read the handbook and asked sensible questions.

When I came in limping again today she asked how I was and I gave the normal reply of - "fine - apart from my silly joints", and she was so excited to tell me that she had met someone else with HMS. She said it was good that I had explained things to her and she had asked the other person if her joints dislocated while sleeping and they had said yes etc etc etc.

She was going on and on about how cool it was she knew what it was and then saw the look on my face and said - "Oh - I don't mean that it is cool that you have the condition - its sounds horrible and painful and I would hate to have it - it's just is good I know what it is".

She is really sweet, she is only 21 and really caring - I wish everyone else was as willing to try and understand - and then maybe we wouldn't need this thread on how to explain it to the rest of the annoying people in my department. (She is only the temp admin person so no actual input on my daily working unfortunately)

[anna]

Thanks for this thread - I still cannot get most people to understand and can't tell most of my family because of various reasons i.e. I wouldn't be forgiven - long story. What I tend to tell people is about my arthritis - 'cos they understand that - well, sort of!!!

[vixenmeister]

I have most trouble getting my husband to understand. Work on the other hand goes to the opposite extreme - someone I used to work with when I told her that I finally had a diagnosis pointed out that I have a joint research publication with the genetics consultant I saw. Even though we both recognised each other (odd out of context) I'd totally forgeotten about it!

One of the labs already have some of my cartiledge in tissue culture (long story) and being as the science world is SMALL I was amamzed by how many of the consultants / specialists I seem to know / have colleuges in common with! It is odd meeting them in a clinical context and often means I end up talking science with them rather than symptoms and so have a tendency not to get the correct treatment pain medication etc.

Also I am thick thick thick. To have research in common with these guys and some publications with researcheres in the feild gives me no confidence at all!

Vix

[cuddles]

i know it could never be done ,but for loved ones and colleagues it is a shame you couldnt take them for a long work out at the gym .
i know it sounds a silly thing to say ,but put them in a gym for a couple of hours ,get them to use every bit of apperattus ,until their joints ache ,until their muscles are burning with pain and they have had every ounce of energy sapped from their bodies ,THEN you could look at them and say "thats how i feel every day "
even when you do tell people how you feel ,90% of the time people never fully take it in ,and 24 hours down the line they have forgotten what you told them ,and you feel like

its the same with physios and other medical proffesionals when they say ,"explain how you feel ,in your own words "
next time anyone says that to me i am going to get the tow rope from the back of my car , attatch one end of it to the car ,the other end to the idiot that asked me the question ,and drive slowly for say 6 miles ,doing no more than 5 miles per hour .
i will attatch a flouresent jacket to them with "medical research in progress ,do not stop " and after the 6 mile run ,i will pull up ,go around and detatch them ,and say " i feel like that ,got it "

when God put us together he missed out a few things ,and for that reason we have to suffer ,but explaining ourselves add's to the stress ,and it does make it hard for us to feel accepted in society .


ok its bed time ,i will continue this another day

cuddles xxxxxxxxxxxxxxxxx

ps . the answer that you are seeking is in your heart ,when the time is right you will find the right words to say ,just try believe in yourself

[hannah]

I was trying to explain to a colleague why I have to concentrate so much to walk (we have an office rule that no one talks to hannah when shes standing unless she is leaning on something) and why I'm soooooooo tired/worn out.

I didn't do a very good job and today I thought of those little animal toys with string joints and a button you press to make them collapse. - like these:

http://www.traditionaltoystore.co.uk/index.asp?function=PRODUCTIMAGEWINDOW&closedelay=20000&SRC=/ekmps/shops/traditionaltoys/images/7996.jpg

Normal person = giraffe without button pressed
Majorly severe classic EDS = button fully pressed.
Me = somewhere inbetween.

Maybe if I got 2 and said 'This one is you. Make it stand up' - obviously nice and easy. does it automatically.
'This one is me' (tape button partially pressed) and then give it the person and tell them they have to try and keep it standing and not falling over by adjusting the balance and/or supporting joints, but without releasing the button.
And then point the difference in amount of effort they put out that in the process of keeping the 2 standing.
Then point out a couple of joints that have been really stressed in the process of trying to keep the 'me' giraffe balanced. And maybe while they are trying to keep it upright make a few comments on joints they have dislocated/sprained/subluxed.

And finally take the other giraffe and say 'and you are still standing'.

This should make them realise a bit better. Maybe.

I haven't tried this, but I am wondering whether to invest in a few giraffes (or if I can find them, zebras) and see how it goes.

[Sue New]

Ohh, Hannah - I think that is a great way to explain it

Hubby bought me a Zebra one of these things for Christmas for one of our traditional "Snowman" present (these are always little novelty gifts that fit inside a hollow Snowman, that has been in the family as long as my Brother - 41 years!!).

I am not sure where he bought it from, but I will ask him later when he gets in.

Sue.