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

[Nightshadow]

My mother was with me when I was diagnosed with HMS at 14 (Im now almost 21) and has watched the gradual worsening of my joints since then, but refuses to acknowledge that I need a treatment plan in place. I want to try and find the Rhuemy that first diagnosed me as he obviously has a clue as to what HMS is and what it can do over time and my mother has now told me to stop obsessing over my condition and learn to live with it. I don't feel I'm obsessing and I have learnt to live with HMS but I know there are treatments that I havent tried that may reduce the pain and inflammation in my joints and I feel that they may be worth a shot at trying...Any ideas on how I can get my mother to see reason and my family to understand that my condition isnt just a case of flexibility but an actual joint condition that causes severe pain and discomfort. Despite reading up on HMS, they just DONT SEEM TO GET IT....its frustrating me to no end because without their acknowledgement and support, I cant get to specialists or any sort of therapy (Unemployed and currently in a wheelchair)...I am at their mercy....

[flyingfairy]

All families find it difficult it sounds like to me that your mum is trying to brush this under the carpet but you can't you have to face the problem there are many treatments out there that help one person but not another and till you try them you don't know what will suit you. Your mum has got to deal with it i am afraid, you need to be strong a stand up to her otherwise you will never be able to live a normal life. Alot of my family still don't understand fully HMSA.

[Guest]

my mom doesnt understand either, from when i used to say i cant goto school today mom it hurts to much...to now even being diagnosed. she cant feel our pain and as much as she tries. another thing maybe your mom just hates the thought of you being in pain so much, it is a horrible feeling for some mothers and perhaps shes in a denial stage like flying fairy suggested

[Shadowlady]

My parents had difficulty accepting my HMS too. My Mum seems to totally get it now, which is such a releif as I can chat to her about it, it took a few years for it to 'get through' though. My Dad still doesn't get it and regularly asks things of me that are too demanding, like lifting his obscenely heavy suitcase out the boot because he has a bad back (slipped a disc 20 years ago). I had no chance of lifting it, not at all. I feel horrible but I just said "Well, you managed to get it in there" and walked off to tell my Mum who spoke to him about it again. I know it would be easier if I could talk to him in a rational, matter of fact way about it, but I find it so emotional! Why can't he just beleive me? The same when I was clinically depressed, he thought I was going through a 'sad phase' and now I've worked so hard for years to feel better it's as if that supports his 'going through a phase theory', like it was never a real problem. Ha, and when my brother came out, he thought that was going through a phase too!!! Twelve years later and my bro's bf was allowed to visit on Christmas day 2005 (the previous few years bro was absent because of a bf ban, which didn't apply to my bf's!)

I think he just has difficulty accepting what he sees as 'flaws' in his children, especially genetic ones! Though I'd never say that to him, and he'd never admit it! He seems to prefer to think of us as perfect, and has high expectations to match.

Have you ever tried telling your Mum just how hard it is for you that you feel like she doesn't support you? I had that conversation with my Mum, she said it wasn't that she didn't beleive me, and she thought that she supported me, but often she simply didn't know what to say. Her generation are very much 'put up, shut up, and carry on', my words - she never said that to me thankfully, but I understand now why she acted as she did. When I chat to her about stuff now, she's a lot more sensitive and supportive, which really helps me to stay calm and rational, and have a productive conversation.

You have my sympathy Nightshadow, I'm full of hope that'll your Mum will come round in time as mine did. Until then, you have us... we understand your problems, we know your pain, and we support you

[flyingfairy]

i think they find it difficult because the end of the day whatever age you are you are still there babies and they don't like to think or see you in pain. It must be very difficult for them especailly in my case when i dislocate and my mum has to see me go through so much pain and she knows that more than likely she is the one that has given it to me

[rainbowbrite]

Hi,

I'd guess there is already a topic like this one, but I could not find one, so sorry if I am repeating.

I just wondered how people go about explaining HMS to their employer/friends/family.

I always have a good plan in my head about what I should say but then it doesn't come out like that, usually because in the situations that I am going to explain I am either in a lot of pain/on verge of tears so I am trying not to cry and I just gloss over things. I also seem to be really bad at answering peoples questions about it so don't do myself a lot of favours.

Do other people have similar problems? How do you find it best to get people to understand?

[hannah]

Good question. I will have a think on this one. I think there is a thread on similar stuff and will have a look for it while I think.

Will post again later

Hannah

[rainbowbrite]

lol! OK! thank you! x

[hannah]

There is this thread http://www.hypermobility.org/forum/viewtopic.php?t=2756 on telling people at school, but I dunno if it quite what you are looking for.

I too am almost unable to sit and explain HMS/EDS to people without crying. I have a number of strategies (apologies for the length):
1. for people who are casual acquaintances: An overly simple "I have EDS it means that my bones aren't held in place properly, and yes, it does hurt."

2. For people I see a lot (like work colleagues) (Note, I got on very well with colleagues at work, which helped a lot). I found that people just couldn't take it all on board at once. So I told them a little at a time. Over a few months I built up their knowledge. I was using crutches at work cos of pelvis pain before diagnosis, so they knew I had problems with that portion of my anatomy. After diagnosis I told them "I have EDS it means that my bones aren't held in place properly, and yes, it does hurt." Then later "could you help me with x - my wrist just subluxed" and later when someone commented I looked tired ‚ "yes, it's part of EDS - my muscles have to work overtime to keep me together, plus I have trouble sleeping because of pain, so my normal is probably your feeling like you have flu." etc. It was difficult, but it meant that I only had to say one sentence at a time I was less likely to cry. I also gave my manager a written blurb on how it affected me.

I would also often explain something the next day, for example when in lots of pain I can be really short with people, like I am really offended. At the time there is no way I could explain why without melting in tears, so the next good day I said "sorry for being so ratty the last few days, x was hurting so much I felt sick - please don't take it personally if I sound cross with you - the chances are it is because I am in pain."

I also got the first aid guy to agree to a "first aid for hannah" procedure - basically don't touch me unless I give you permission, or I am unconscious and it is essential, don't call an ambulance unless I agree - dislocations are normal, and don't EVER put me in the normal recovery position (pelvis would never forgive them ) I also did an info sheet to hand to paramedics if needed. That meant I knew that if anything happened at work I wouldn't need to worry or try and explain. (I did this after I collapsed at work one day and was struggling to explain stuff to the medics - then I collapsed again and my manager just handed over the sheets and hey presto, they were fully updated on my condition )

Another option is to write a letter about it. There is a sample letter on the homepage which is really good. I adapted this and showed it to some people I am close to. I also did one for my boss at work.

3. Writing it down in letter or email form. last week I sent an email to my old uni friends to let them know as in my profession everyone knows everyone so they would otherwise of found out on the grapevine. - a very basic info note, very hard to write, but enough to stop them being horrified if I meet them unexpectedly and I'm in a wheelchair.

4. with friends I also used the little by little approach. And decided to give them useful pointers at times when they weren't imminently relevant, so they had time to sink in and also I wouldn't cry when explaining. like when I was round a friends for coffee I mentioned that I really appreciated being asked to do stuff with them cos then if it is a good day I can say yes, but if a bad day, I may say no but I am reminded I am still one of the gang. I would far rather be invited and say no than be left out.

It does take a lot of courage, and you will probably have to cope with the 'I'm sure theres a cure' or 'but it doesn't affect you that much' comments, but usually these are because people are struggling to come to terms with what you have told them. For me though it had definitely been worth the effort - you can't expect to get the support you need if you don't let people know just how bad things can be.

I'm not sure how much sense this is making, and I think it may be wise for me to shut up now
If you want more info/clarification on anything I've said (or not said) feel free to ask either here or by pm.

Hannah

[Englishgremlin1]

Hannah approach is good. many will never fully understand as the medical speak is something they cannot cope with or understand.

I took it in stages at work - first by saying it was a problems which limited what I could do, then that is damaged my joints, then that is was genetic, and finally the name and that it would not go away.

Some people will never "get it", for various reaaons. Most will understand a bit. One thing you could do is print off some of the info from here and the EDS support group which is in plain langauge and it they ask give them a copy.

Family can in some ways be trickier, if it is something genetic you have to allow for their fears - it may also effect them! I did it gently and to closest 1st, I did email around some of the key bits. It is like al bad news - it takes time to sink in.

I found a number of people who did not want to understand, they still ask "when is the oepration that will cure you going to happen?" - I do not know the answer to that one accept keep plugging away.

I hope that you have someone close who does fully support you, even if not fully understand - that was my lifeline.

[rainbowbrite]

Hey, thanks very much for your comments so far, i'm thinking of emailing my boss tomorrow to explain, as I've had a bit of time off recently, and have never really explained what is wrong (mostly because I didn't know myself!) but am having probs knowing how to word it without me sounding that I am incapable of doing my job/asking for sympathy.

Aaargh! how annoying is it!

Your ideas have been very helpful x x

[ombili]

Can't say I have an answer to this one, but I look forward to reading more responses, as I'm going back to work after telecommuting for the past year, and when I left I was extremely active and was known as a marathon runner, so I think it will be difficult. My general M.O. up to now has been not to tell anyone anything, but it's uncomfortable and frustrating, of course, because then they ask me questions like when my next marathon is, and I can't answer them very well. I just hate sympathy and I hate feeling like I'm making things up, which I know is the usual impression people seem to get when you have an illness they've not heard of. After all, even my cardiologist thought I'd made up HMS! And I know there are others who are much worse off than me so that makes me want to grin and bear it.

[christianne]

Hi
There`s a great story called something like 'the spoons theory' on a website called http://www.butyoudontlooksick.com, it`s about lupus but applies really well to EDS and other debliltating diseases too, it`s a great idea for explaining to people how the disease affects you.
Christianne

[Sue New]

Hi Rainbowbrite,

I am in the process of collating an anthology of poems written by members on these boards all about how they are affected by HMS/EDS. All being well, I hope to have the book in print by September .

All the money raised from the sale of this booklet will be donated to the HMSA. You may find this a useful tool to show to friends, family and colleagues once it is in print.

So far there will be 31 poems in the booklet and I think it will be a real eye opener to help people to understand what it is like to be living with our condition.

If you are interested in obtaining a copy of the booklet, there will be a number of us selling copies, so please take a look in the fundraising section for more details coming soon .......

(Sorry for the shamfully blatant plug, but it is all in the interest of raising awareness and funds for the HMSA ).

Bye for now,

Sue.

[flo]

What a good thread. Gave me food for thought! Not sure I can add anything....

I have tried to remember what I have felt when people i work with have told me their diagnoses. I think it is very hard to relate to a medical term you haven't heard of before, so I think less info on the "heritable connective tissue disorder" and more on what it means to them in practical day to day terms. They will ask later if they want to know more, especailly if you manage to convey that it is not something you are embarrassed about.

So ... "I have a medical condition called x. It means i am bendier than most people, I am prone to injury and pain, so I have to be careful about how I do stuff and ....add whatever it is you want them to accomodate you in, eg please would you lift this, send that e-mail, carry that etc etc".

People seem to respond well to clear instructions, and remember them better too, unsurprisingly.
Good luck
Flo