Personal acceptance of HMS - coming to terms with it

[Guest]

Hello,
I'm starting a new job next week and so far the only knowledge they have of my HMS is that I've declared it as disability on my new employee forms + occ health assessment. I feel I should discuss it with my new employers but whenever I think about explaining what it is and what it means for me I feel overwhelmingly sad (which I thhink must be fairly obvious to whoever I'm telling). Since I was diagnosed I've got much stronger with better physio etc but I'm still a fair way off from 'normal' (whatever that is). However, I keep thinking (&feel) I've improved enough to be pretty normal but then find something I can't do/find difficult and back comes the sadness (& p*ed offness!).

I'm wondering how other people cope with the experience of telling new people about HMS and/or disability. I always feel a certain level of emphasis is necessary on the negatives in order for people to truly take it seriously but I then feel like I'm making it sound worse than it is & that I'd rather be too light-hearted about it to avoid it becoming a big issue. The only people I've ever found who really make disclosure easy are disability officers/coordinators etc who take a small amount of information about it and immediately realise all the issues and problems that go with it - without you having to tell a sob story first. If only every workplace had these people!

I would really like to hear other people's experiences of accepting the limitations of having an HMS body or other condition; of helping other people to understand it and coping with the actual act of disclosure/explaining it to someone else...

Thanks,
luv Cafrin

[Guest]

Hi Cafrin

I totally sympathise. I am newly diagnosed, and find telling people hard as I seem to have it in my head that it IS just in my head. I can't really explain, except that being told for so many years nothing was wrong, I find it hard to belive all of a sudden this diagnosis has come along and tied up so many symptoms that I assumed were part and parcel of everybody's life. And now I have a little name to cover it all, and explain it by, and it overwhelms me. It seems unreal.

I am looking for the perfect leaflet for me - to get lots of copies of to give out! I have so much info, but I can't ask my parents, for example, to sit and read it all, it'd take hours! Also, not all of it is relevant to me, and it freaks them out. (Plus, I would never say it to her, but I swear my mum thinks I'm just reading up, and reading forums, and picking symptoms that I don't actually have. She thinks I ahev an over active imagination -and she's right, but not in this case)

Anyway, my personal solution is printed info. Something to hand over and say - this is some general info about what I have. It won't cover everything, but if there's anything else you'd like to know, please ask.

I find that the temptation to either build it up and seem like you're exagerrating (even though we're not) or worse still make it seem insignificant, is taken away with the written word.

I hope I've helped and haven't just waffled on and made things worse. Good luck with your enw job! And congratulations too

[roqchiq]

I have to agree; the written word makes it easier for others to accept. If it's in black and white they can't accuse you of making it up.

On a personal level, it takes time to accept the diagnosis. I thought getting a definitive diagnosis would make me feel better, but actually had the opposite effect for a while. I think it was 'cos it forced me to accept that this was for life. Any way just to let you know, it takes time but you'll get your head around it all eventually. Good luck

[Jenny]

I find it very difficult to explain to people quite the extent of my condition, to the point that one of my closest friends didn't realise that my whole body and life are affected. It wasn't untill he stayed with my fiance before we went away that my Fiance explained how much he needed to watch out for my overdoing it whilst we were away (camping). Needless to say he was absolutely fantastic, empowered me, but made sure I rested when I had to.

The point of the story is people can't help unless they have the information in the first place. I believe it is best to exagerate than the opposite. I tend not to tell people, too proud, but it doesn't help me in the end. So go for it, be strong and tell people what you struggle with, explain that you need to pace yourself but that you are still capable of most things!

Feel empowered!

[hannah]

Hi Cafrin,

I hope you're work is going well so far. The reason I haven't posted before was beause I just didn't know what to say. I have been thinking a
lot about it, so here goes (if it doesn't make sense for you, please ignore)

When telling people about HMS I say "it means my ligaments don't hold my bones in place properly" in the most matter of fact tone I can. If they were just curious they wince and change the subject, if they are genuine they usually say 'doesn't it hurt' "yes, a lot". It seems to give people a fair picture without lots of explanation.

I keep thinking that I am approaching 'normal' in what I can do too ( I can get all the way to the kitchen from my desk without crutches some days), and then realise that actually I'm not (I cant get back ) Actually I keep some of the crossness, adn convert it to determination - it helps me not to give up - I might not be able to do it now, but I will be able to.

I also look at what I can do. it is lots more than a year ago. also I am so much better at coping. when my body does something wierd I roll my eyes and think 'HMS again' instead of worrying about it for ages.

HMS is teaching me patience and perseverence, empathy and appreciation for all the small things people do for me (I posted about this in the poems thread). These are undeniably positive, and really, if you look at people around you, they can be healthy but totally miserable because they can't appreciate things. I think that is perhaps something that has helped me most.

Anyway, I really must shut up now.

All the best,

Hannah

[Guest]

Hi,

THank you for all of your kind words + advice, they are all really helpful. So far I haven't mentioned my HMS to anyone, but today I ended up carrying some stuff that ordinarily I'd leave to others, and rearranging tables... Utterly stupid I know, as I'm paying for it now with my painful 90-yr old-type standing up and shuffling routine.
It was really helpful to hear Hannah's version of the 'normal' she's striving to achieve, as although I now see how totally subjective 'normal' is (and therefore perhaps irrelevant for people with HMS), it does make me feel a bit ashamed of being so bothered about my relatively minor difficulties in comparison .

I think the written word is great advice +is the way to go. I've got a couple of leaflets, plus my diagnosis letter, which might work. There is also the letter occ health have sent my employer, which basically says I can do the job unimpaired but shouldn't be lifting anything heavy/awkward and workstations should be properly sorted, ergonomically speaking. Obviously, my employers should have this but I think it is time for me to start being assertive and go to them with the info, rather than waiting to be asked (but perhaps when I can keep it together emotionally!) - I think the thing about not being believed is partly what stops me saying anything, as well as not wanting people to think you're just saying it for the attention or to get an easy ride. I'm really annoyed that that feeling (of it all being in your head) + guilt associated with it are still hanging around despite the diagnosis & having people take it seriously. It's stupid .

I will start trying to decide who to tell + how, and let you know the outcome (if I manage to do it!)...

Thankyou again

luv Cafrin

[Guest]

I'm really annoyed that that feeling (of it all being in your head) + guilt associated with it are still hanging around despite the diagnosis & having people take it seriously. It's stupid .

I'm struggling there, too. Maybe it's the type of personality we are, I can't (and wouldn't ) speak for you, but I tend to think way too much about things I imagine people thinking stuff that probably never crosses their minds.

Where I work, at the end of the session the chairs are stacked away. It's polite for everyone to stack their own chair. I can't. Well, I have done - but like you said, later on after smiling with gritted teeth, there I am, shuffling around in agony. So I tend to sort of smile apologetically and mutter about "Sorry........... can't............... sorry, thanks, sorry..........." at someone else doing it.

I mean for goodness sake - I can't lift a bleeping chair. No big deal. So why do I feel like they're all thinking "Lazy so-and-so" and have such a guilt trip over it?!?! I'd do it if I could! I would.

Anyway - good luck Cafrin and keep us up to date

[poppy]

i am temping at the moment, and do not feel comfortable letting my employers know about my conditions... i feel really lazy when i make excuses for not helping with more physical tasks in the office. i just find something really boring noone else wants to do, and occupy myself with it... that way at least noone will want to disturb me!

as far as the pain goes, and the explanation of my special chair cushions and supports, i just say theyre sporting injuries, or if i'm feeling brave i say i've got "a little bit of rheumatism, b****y damp weather". the severe depression i suffer from is harder to hide than the physical symptoms (bizarrely), i have some quite horrific scars on my skin from it i have to keep hidden plus when i get interviewed for jobs they alwasy want to know about the big gap in my employment history from when i was under compulsary detention!

i wouldn't rush to tell any employer about my pain, but if they asked i wouldn't be embarrassed and i'd expect them to help me and be adaptive. whereas the depression bit of my HMS... i'd never share that with an employer, theres real humiliation there. i see p[hysical flaws as being something i can't help... but i know people don't see depression this way. i am worried i will slip up sooner or later though! antipsychotics have quite a dramatic effect on your appearance!

so in conclusion... i am much happier just saying to someone that i have a bit of arthritis than anything else. people understand arthritis... whereas employers are certainly going to be wary of somethign that makes you tired all the time.

pops

[hannah]

Theres a thread in 'social issues' called 'to disclose or not to disclose at work' (sorry I don't know how to do a link ) that talks about some of the work related issues, you might find some useful stuff on there.

and supporting vibes to all you others trying to walk the tightrope of HMS life. Just remeber we are not alone and definitely not inferior in any way. The quiet courage it can take to get through a simple day is greater than many others ever have.

So may you enjoy life and 'have it good' (as they say in Norway)

Hannah.

[flyingfairy]

in my experience it is best to tell them,you can always just tell them the bare facts you don't need to be 100% truthfully

[Guest]

Hi,

I found your post really moving, as it can be so hard to accept your physical limitations. I am 22 now but found that all through my early and late teens I massively played down my condition so that other people wouldn't know I was different. I hid it pretty well, except that obviously i was unable to participate in all the school sports. As my HMS primarily effects my knee joints I was able to disguise supports and braces under my trousers. I think it was obvious at the time I was trying to fit in and be like everyone else, but I think also sub consciously I was trying to deny to myself that I had problems.

Since I turned 20 and for the last few years I have totally accepted my condition. I make my friends and partners aware of it and don't feel like I have to pretend not to be in agony just so other people don't see my limitations. I don't really know what the turning point was. I think it might have been because I was in an emotionally abusive relationship and despite the fact my esteem was at rock bottom straight after it, I've had counselling and the support from my family has made me realise that I am worthwhile, whether I dislocate or not! So maybe issues surrounding HMS were resolved simulataneously.

Good luck and take care,

Eleanor xxxx

[flyingfairy]

you are very lucky to have come to terms with your HMS alot of people i speak to try to hide it all of there lives,you can't live like that you are right suddenly there comes a time where you think who cares what people think,it does take you a while and some people are really unlucky and go on hiding it all of there lives