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

[Jai]

Hi all, I know I hardly ever post on here any more but I do think of you all! Anyway, someone has just refered me to 'the spoon theory' and it's perfect. It explains EXACTLY how it is to have a condition like fibro, or lupus, or HMS, or many others. If you want to explain to anyone how it feels, refer them to this (it's only about a page long). It's here:
http://www.butyoudontlooksick.com/navig ... Theory.pdf
And it's wonderful.

Thought it might help some of you.
Jai
x

[l00pyp0u]

Jai,

That is WONDERFUL. I read it and it made sense to me, copy being printed now for hubby and everyone

Thank you

Lou

[Blaadyblah]

The spoon theory has been mentioned a number of times on the boards (and a few times in this topic), I'm moving this post to the topic on explaining things to friends and family as I suspect it'll be of most relevance there - people tend not to search for spoons, but rather for ways to explain.

Personally, I love the spoon theory explanation but tend to find using currency and budget analogies more immediately understandable to anyone who doesn't have a chronic illness.

[pink]

Blaadybah - not sure what you mean by that.

[Blaadyblah]

pink: I mean that I find normal people better understand my saying that while they have a daily activity budget of say fifty pounds, mine is more like thirty and that in addition while a trip to the shop may cost them five pounds, it costs me ten - so I run out of 'doing stuff' currency long before they do.

[Flora]

I've never thought of explaining things like that before Blaadyblah! That's a good way to explain it, specially to someone who doesn't really know what it is like to live with a chronic condition. Personally I like the "giant gorilla" theory, that living with hms is like having an invisible gorilla that sometimes lets you do stuff, but other times picks on you for no reason. My gorilla is called Graeme, and has today decided that I am forbidden to use either hip, and is holding my left elbow so tight that my hand is tingling.....
The only problem with the gorilla theory is that some people are far too serious to get the idea.
Flora

[l00pyp0u]

Okay, internet going slow so I got half way through this thread, and gave up, as I thought of a couple of things, that I have done in the past.

For, occasional acquaintences, "Still waiting for a full service and MOT on the NHS!"

For someone who is interested, genuinley,but someone you don't know, like the poor taxi driver, the other day, " you know collagen makes you strectchy? well mine makes me too stretchy, and things fall out of place a lot, like my pelvis at the moment." ....Nope it's genetic, cant do anything about it, it's how I am built."

I sort of had a problem explaining to hubby about it. and for all I complain thAT he is Soooo north East working class, and I ranted when I was awarded DLA, and he called me a cripple, I have actually found that since then, he's become very good at explaining to others for me, as in Neighbours and so on. And even though, currently, I am avoiding the issue of a wheelchair, even though I know it would do me a lot of good, but still, I wont go there, he actually is seriously thinking about it, and has worked out that he isn't going to leave me when I get that bad, strange man. he's even working out a rota for pushing the wheelchair up steep hill in lincoln, at the christmas fair.
He now accepts that he cant fix things,a nd make it alright again, and this is such a sudden turn around, that it has left me bemused. I have no idea, how or why he has suddenly come to understand. He doen't understand the having to get up and move things though, and wants me pinned on a settee, all the time, with everyone else doing things for me
Don't ask me how he came to the conclusion, as I don't recall saying anything in particular about it, so I cant give advice on how it suddenly happened. Just hold onto the hope that It may happen for you aswell.

Lou

[BendyBoff]

I like the gorilla thing, Flora, very inventive! I can see how some people wouldn't get it though (my mother in law being one of them!)

I started a new job last week and so decided that as my proprioception is rubbish so bruise a lot and also make some very nasty cracking noises when I move that I had better explain the whole HMS thing to my colleagues. At the interview I had mentioned it to my manager when she asked about any reasonable adjustments that I think I may need so she was aware and actually asked if I would mind explaining it to the others (there are only 5 of us). I took some leaflets that I got when I joined the HMSA and told people to read it if they wanted to as they explain better than I can. I then just said about the collegen thing and that my joints are all a bit wonky and sometimes pop out and back in! I made it into a laugh and told stories about my 'little trips' so that it was not so intimidating for them. Luckily I work for a charity that works with people with disabilites (both physical and learning) so everyone is more open to understanding different conditions. At the end I just said they should feel free to ask questions if they want. They were very understanding and it was easier than I thought.

I am lucky that the majority of my family are hypermobile so don't have to explain it to them and my hubby was there when I got the diagnosis so had it explained by the consultant.

xxxxxx

[curlysue]

Lou, I'm glad to hear your hubby has come to understand your condition - it just shows what can happen with time. A similar thing happened with my parents.

I am still having trouble with a couple of other family members though - my cousins - at the moment we are not speaking to each other, it's quite stressful. They said I had let my illness 'define' and 'defeat' me, based on no evidence whatsoever. They said that they miss the 'old me' (whatever that is!!) and that maybe I should 'think more positively', etc etc... one of my cousins came to the city where I live one time, and expected me to join her and her friends for coffee in town - I had no transport that day (OH was out, can't walk to bus stop) and was feeling rough so I said I couldn't go... and she told me she thought that was a 'poor effort' and had a go at me about it. She couldn't have popped into my house, of course. That would have been too inconvenient! That's just a fraction of the things they've said to me lately. It's really shocked me as we've always been very close, like sisters. It's been very depressing.

I'd like to think that they would come round but the difficulty is that we hardly ever see each other at the best of times so they never get to see me day to day and really come to understand the problems I have. One of them lives in Australia and only comes over to the UK once a year - I'm lucky if I see her for a few hours each year. The other is a media luvvie in London and is always out on the town, networking etc so everyone always has to understand that she is terribly busy etc etc...

The problem is, how are they ever going to come round and start to understand if they blank me, ignore messages etc and never see me? Has anyone else experienced this type of behaviour from family or friends? I hate to think that we would become estranged but it looks that way at the moment.

I have sent them the Spoon Theory and the gorilla story but as far as I know they haven't read either one. My mum has tried to intervene but with no success. She even sent them some info about Chiari (my other condition) as someone was on the 4th Plinth in London raising awareness of it recently but they ignored that too.

I'm really hoping that one day they'll have an epiphany but I'm not holding my breath, as when you have such distance from someone it is easier to believe things about them that aren't true. My parents were forced to confront the reality of my conditions, but my cousins never will be, it seems. It really hurts to lose good relationships purely because I have had the misfortune to have a chronic illness.

Anyway this has turned into a bit of a rant, sorry! I just don't understand how people can be so... well... non-understanding!

Thanks for listening

CSx

[l00pyp0u]

Hey CS

Hms is inheritable, have your parents got it? coz if they have then it is reasonable to enquire as to wether, the offending cousins have it? And then point out that if they have got it, then their kids can get it, etc pile the guilt on for passing on a genetic condition to their kids, suggest genetic screening for them, etc, they can afford it, privately, as they are soooooo busy.

I know my mum was hypermobile, but it was her fingers that I recall. She may have suffered some of the effects, but she had a Kidney condition from early teens, that eventually resulted in a transplant, and was constanly in and out of hosp, and taken seriously as a result of the Kidney problems. Now I am trying to ascertain a to wether my uncle, and cousins have it, which I agree is rather hard, especially as we are not too close. I suspect my uncle does have it, but trying to talk to him about it, is rather hard, as he developed OA severely, in his mid 30-40's, and is touchy about talking about how it happened. He believes that it is a result of a stupid accident, which shouldn't have caused as much damage as it did, sound familiar anyone?

I don't know if mum was the first, from the above I suspect not, and now I am trying to contact one of my distant cousins, to see if it is on that side of the family tree, but like your family, they are all "incredibly busy professional people", so I understand the frustration. Hubby laughs at me, when I put the "family face" on.
I find a lot of them are snob's, and don't have the slightest idea about the real world, as such, and that's probably where my Uncle has suffered from a lack of understanding, and ridicule.

So a big hug hun, and I do understand,

lou

[jax]

Curlysue,

I can totally understand how you are feeling as I've had similar attitude
from certain individuals - one of the letters is broken on my keyboard so I'm having to find words
that don't include it so bare with me.

I don't think I'm affected to degree you are in terms of walking but
it does affect me in other ways. Very little understanding from
certain individuals. Alot of these individuals are like - just crack on
with it - avoid being negative and it'll all just go away. They go
through far worse and still have to crack on etc etc. You know
someone's got a sore foot that will get better in a week and they
seem to get more understanding!

The only thing I've realized is to use your energy wisely - ie. on
the good one's and avoid wasting your time on those who
are being mean etc.

Also wouldn't waste time on trying to inform family members who
don't want to know. You can mention
it and give advice but I wouldn't let it affect your health!
The issue with trying to advise or share what you going
through with certain individuals who don't want to know,
is that they could get quite mean!

In some ways this has been an extraordinary life-changing
journey as it has allowed me to see where I really stand with
certain individuals. It is sad but in some ways it is also quite "cathartic".



Jax
x

[lil_miffy]

my current speech is :

'I have a connective tissue disorder (they understand what tissue is and disorder means it doenst work properly). my collagen is more like chewing gum rather than glue. collagen is what keeps everything in place and also makes things move like your joints, skin etc. so mine move loads more than they are supposed to. '
I then do the 'imagine this is the end of your bone and this is the joint socket (one hand is cupped like a socket. the other is in a fist like the bone. then i show the bone moving all over the place and coming out of the joint etc like our joitns do). My joints feel like they are made of glass and could shatter at any time. the more i move around the thinner that glass gets. It makes me very tired like people with CFS/ME and i have that achey feeling everywhere you get when you have flu.'

[curlysue]

Lou & Jax - thanks for the support!

I know you're right Jax about not wasting precious energy on people who are being mean - my OH tells me this all the time - but somehow I'm finding it difficult to 'switch off' from it and accept that they are not interested right now and they might never be. We were so close and told each other everything etc and to go from that to this is really depressing. I will get over it though, I'm sure! I guess they're just not the people I thought they were.

I completely relate to the 'just crack on' philosophy. I've tried to explain that some things are physically impossible, by saying: 'You wouldn't expect someone with paralysed legs to get up and walk around, so please don't expect me to do x' or 'I wouldn't expect you to run a marathon every day to prove your friendship to me so please don't expect me to tire myself out in a similar fashion' etc etc, but it doesn't seem to go in!

I agree that it's pointless to carry on giving them information - the info is out there anyway on the web so if they have a change of heart and want to learn about it, they can! They have been mean enough already...

Thanks again... by the way I was trying to work out which letter isn't working on your keyboard... is it P??

CSx

[jax]

Curlysue,

the letter was P - how did you do that!

[curlysue]

Jax, I read through your post and tried to spot which letter didn't come up - yes, I am a geek.