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

[cghanima]

hi iv just come back in the house from seeing the kids off to school when the lovely old guy who lives opposite shouts over "i see that knee of yours is no better you think thay would have fixed it by now" and i laughed back no im a lost cause should be shot, while thinking if only it was my knee, i went physio yest and its my ankles and hips that are the problem she talking about orthotics but that another story, i just get so fed up of people asking oh what you done now??? i sometimes wear a splint on my hands when they decide to join in the fun and i often take them off when i go out so i dont have to explain, oh have you broke your arm???,how did you do that?? , my mum is pretty good she has arthris(sp) so understands and my friend laura is a god send she just takes the mick until i see the funny side-wobbling out of pubs while sobber- listens while i rant and basicly understands im not a freak im just special lol, and hubby is gettin better iv got him pretty well trained now, but my dads fav comments so your ill again??? what this time??? you want to be more carefull!!! and from the inlaws(which is nice in a way) no coments at all, i just dont know how to- or if i want to explain.

[Englishgremlin1]

I have come to the conclusion that this is such a condition that people do not understand it all at once. For the people closest to me I have realised that the best way is to let them understand bit by bit. At first I used to give people some of the information or try and explain it to them but it is too much for most people to comprehend in one dose.

My first step was to say it's genetic, then about collagen and after that is how it affects me and can be variable.

Hope this helps you a bit

[Tabi]

Depending on who it is -
Customers at work - either "I have Ehlers-Danlos Syndrome" and smile smugly, or cry.
Friends and colleagues - "I've got a problem with my joints, it makes me really bendy so I dislocate and hurt." Also often use for fibro "I hurt. Im not having a heart attack, can I lie down?"
For parents and OH - "I want to go to bed. I hurt all over. Can I have a hug? Oh that hurts. Can someone heat my wheat bag?"
Ahem. Luckily my parents understand. Mum's got ME so it's fairly normal to have a damaged person!!!
Tabi xxx

[stretchygal]

Hi,

I was just wondering if anyone else here has had it happen to them that they tell one of their friends about their condition & then never hear from them again? I realize that those people probably weren't my friends to begin with, but it hurts terribly nonetheless. Just recently, I reconnected with an old friend I grew up with. In my last email to her, I talked about my HMS amongst other things. I wasn't maudlin about it, I try to be positive and not bring people down. A month passed with no response, which wasn't characteristic of her emails, so I wrote & didn't get a response. This isn't the 1st time this has happened. I can't even talk about my condition to my own mom. She despises weak people.

Thanks for listening.

[T4mys]

I've had that. However as time goes on it does get easier. I've found that I have made more friends from talking about it openly as people respect your honesty and also you make more genuine friends as they don't seem to judge or be superficial at all. Also if you put positive spin on things then people see how positive and happy you really are despite everything and see you as apposed to the hms. You may have lost a few friends, but the people you meet and respect you for not hiding things are worth so much more.

I'm sorry to hear about your mom being unsupportive, give it some time, she may come round to it. It can be hard seeing someone you care about in pain. So people hide from it instead of accepting it.

Don't change you for other people. You will be happier in the long run being yourself and having people around that accept you for you and thats it

best wishes

Tammy

[cuddles]

i have lost friends due to my condition too .
it isnt that i caused the rift , it was there inability to understand what i was going through .
the point is friends like that you dont need ,and i mean that .
why should we have to struggle to keep up with them ,if all we get in return is grief ,so all i can say sharon and the others is
i have made more friends , and better friends off the few websites i am on in the last 4 years than the other 36 yrs put together

hugs
me
xxxxxxxxxxxxx

[loon]

Hi stretchygal, i agree with t4mys and cuddles - Those that matter don't mind and those that mind don't matter, be yourself don't try and change who you are for the sake of others, the people that stick by you are your true friends and they like you for who you are! Give your mom time, she may need to understand the condition a bit more and she'll see your not a weak person, if anything your a stronger person for getting on with things despite the condition. Keep smiling, you've got lots of friends on here anytime, big , nikki xx

[barkingmad]

Hi stretchgal,
You are definitely not weak! Unfortunately human nature being what it is I think that this probably happens to alot of us. Some of my friends noticeably disappeared when I told them about the HEDS/HMS, I think its a case of what they cant see and understand , makes it too uncomfortable to be around.

Like Cuddles and the others have said though, my true friends have remained true and I have made more friends here and on other places then I lost in the first place! TBH I dont actually miss them either!

A particular person I was close to, did upset me as she lives nearby and despite her knowing my problems she did make a comment the other day about why do need carers coming in every morning! I was going to defend myself as I immmediately felt guilty but stopped myself in the end..if by now she cant see why I need carers then thats her problem. The carers help me soooo much and also I benefit from having enough energy left to help my children and often than not cook tea too, whereas before I didnt achieve anything!

[curlysue]

Hi Stretchygal

The exact same thing happened to me. Certain people who I considered to be close mates have been unresponsive since I told them I was ill. I too reconnected with an old friend, but she disappeared when I told her I was ill. Other people, while not blanking me completely, send me 'small talk emails' occasionally passing the time of day and the weather etc and then ending it with a breezy 'hope you're well' when they know full well I am not! The same people always seem to be busy when I suggest we meet up and catch up properly. Hmmm. I'm not really sure why they bother! I ended up getting very annoyed with one of my silent 'friends' (who I was previously very close to) and emailed him to tell him off for blanking me when I told him I was ill, saying who did he think he was, what a bad friend, etc. I didn't get a reply (surprisingly!) but I felt a bit better at the time for venting my feelings. I'm not advocating this approach though as you might say something in anger that you don't mean, and emails once sent cannot be retrieved!

I have felt very angry over the course of my illness at just how many friends have ditched me, or only keep in touch on a perfunctory level. I have concluded that they must feel extremely uncomfortable with illness generally (as many people do, it reminds them that we are all human and vulnerable), so uncomfortable in fact that they are willing to drop a friend just so they don't have to deal with their issues. Their loss! It is a cowardly way for them to react and it hurts but as my OH says, 'just think less of them'.

As for your mum, I really feel for you because I have the same problem with my dad. He really believes that illness=weakness and we have had several arguments about my being ill. I know what you mean about feeling inhibited about talking to her because I feel the same with my parents, it's often like my illness is a taboo subject. Again it's their way of protecting against dealing with issues relating to illness and vulnerability - our parents are just people after all, like our friends. I have tried to talk to my dad and get him to understand but to no avail so we just don't talk about it any more. It's very sad and I wish we had a better relationship. All you can do is use your own judgement in these situations, realise that you are *not* weak, you are ill, and try to seek others who know the score and are sympathetic - like the people on this forum!!

Take care

CSx

[Tiz]

It's suddenly dawned on me why I haven't heard back from my friend in Australia since in my last email I explained about the HMS, I wasn't in touch with him that much anyway so it's no biggy, I'm just a bit suprised as I didn't think he was like that.

I recently took one of the leaflets and a few photocopied pages from the coping with HMS booklet that I got when I joined the HMSA round to my parents, they haven't said anything about it but I've noticed my Mum can remember what it's called now. Both my parents have been very suportive giving my lifts places and stuff, my Mum came to get me and took me to their house for Sunday dinner last weekend when I was too doped up on painkillers to drive, but neither of them seems very comfortable talking about it, I think they just find it really difficult seeing their baby suffer, they tried to get through my 8 years of clinical depression without ever mentioning the subject so I suppose I shouldn't be too suprised.

[Englishgremlin1]

Hi Tiz - looks like your parents are slowly absorbing reality. It takes time for some people to accept and realise but the first steps are happening - be patient they are moving the right direction.

[curlysue]

Re parents:

Mine have just announced that they're moving nearly 400 miles away from me. I'm pretty upset about it although I'm not sure why, they have been quite hands off since I moved in with my boyfriend so I should be used to it. They seem to be thinking that since he does all the helping and caring now, it doesn't matter where they live. However the distance is immense (nearly 7 hours in the car) and it will be very difficult for me to go and see them because of the pain and fatigue that the journey will cause - I've tried to explain this to my mum and she just said she hoped I'd make it once a year at least. Doesn't sound much I know but I did a similar journey last year and it was horrendous. I don't know how to tell her that this might not happen, especially as my health could get worse. I have tried to explain my conditions to them several times but they don't seem to accept that I will always be ill or that my conditions might get worse over time. I feel as though my parents should - by now - realise how difficult life is for me and adapt their plans accordingly but it seems they are going ahead with their move regardless of any of my issues. I would have liked some kind of consideration from them as regards my health, and it would have been nice if they'd wanted to stay near to me so they could help out and just be a part of my life but hey - I guess that isn't going to happen!

I'm anticipating lots of tense conversations in the months to come, when they actually do move (they have already made an offer on a house!) and I'll have to somehow explain to them that they better not get their hopes up about me coming to see them.

Sorry just wanted to share!

CSx

[shen]

Hi Curlysue,

i'm sorry about your parents, that kind of sucks that they are moving so far away without regard to how you will feel or cope, a 7 hour journey is almost impossible for people like us, whist i understand they have every right to do what they want, its a bit selfish to disregard their child and her needs, especially when they are ill, also i don't understand why you must visit them, can't they manage to visit you?


btw, side topic, where abouts in leeds are you? i live in leeds also.

[curlysue]

Hi Shen

I have tried to subtly tell my mum that they will have to do most of the visiting and she did say they would come up here, but she still expects visits from me 'even if it's only once a year'... not realising that this still might be too much for me. I agree that it's selfish and they've expressed selfish behaviour many times since I've been ill... what can I do? Not much when they've made up their minds. My grandma never leaves the town where she lives and my mum accepts this because after all my grandma is old (94!), no-one could expect her to make long journeys; I however am still young and so such things should not be a problem for me. This is how my folks see it.

Have PM'd re Leeds!

CSx

[elk]

i reckon with an article like this.
Manual Therapy 12 (2007) 298–309
Masterclass
Hypermobility and the hypermobility syndrome
Jane V. Simmondsa,,1, Rosemary J. Keerb,2.

im not able to attach a pdf copy- bc it is too big.