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What's the general consensus on telling people you have MS?

Hi guys.

For years I thought ‘if only I had a diagnosis, I could tell people what was wrong with me and they’d understand, not wonder what the hell I was playing at…’

Now I’m diagnosed, I’ve barely told anyone. I find it easier to answer questions with ‘I have a problem with some of my nerves in my spinal cord which is affecting my senses/my muscles’. Sometimes I need a walking stick and I say ‘I have a problem with my hip’.

Partly, it’s because my mum is still in denial. Before I got diagnosed when I told her we are probably looking at MS she said ‘don’t you dare mention that word again, the doctors would have said if it was that (they did, she just didn’t listen. She was positive and still is that it’s something else.) Don’t go round telling people that’s what it is!’

But, also, you tell someone you’ve got MS and you may as well have dropped down dead in front of them. As far as people are concerned, it’s a death sentence. They don’t know anything about it really. I’m lucky enough to have quite a decent prognosis. Obviously, for some people, it progresses really badly, and I am actually finding myself just passing my DX off with a shrug because, you know what, it isn’t as bad as what it could be!

So, what do you say? I’ve got MS, BUT IT’S NOT SO BAD, HONESTLY!

I just don’t know. I’m confused. sigh

Hi Elle I made sure I told my kids first before the wider family were told, as my Mum has a big ob and would ill their heads with impending doom. I sat the eldest two down first as they were supposed to be more mature. I then sat the other three down, youngest 7 and explained to them. They took it in their stride and they have all been ok. We then told the wider family, and some of them are wide. I then ot 30 theories on how MS develops, who they know, cures by snake oil salesmen, how quickly ou degenerate, was told it all. So much that I am going to live with the aliens on Venus, as they know the score. They see me walking down the road with crutches, I don’t walk well, they say a novena and ate ready to send me o Lourdes. If they were gonna send me somewhere, I would benefit more with 2weeks all inclusive in the canaries with my family. Sorry to ramble but a but of food for thought. Mike x

Elle…hi! I was diagnosed in May and it was a real shock to me as other than optic neuritis last year had not had too much trouble until major relapse in March. Had never suspected MS. I made the descision along with my husband that I was going to tell people straight away. I sat down with family and my eldest daughter first who is 12. She knew something was wrong as I had been off work for so long and I didnt want her mind working overtime. For me it was easier to deal with in the space of a few weeks than dribs and drabs over the next few months and years. Mike your post has really made me laugh! I have had all sorts of reactions, a lot of ‘but you look so well are you sure it’s MS’ to a lady in the post office telling me it was a ‘tragedy as your so young’ yesterday when I was sorting my driving licence. My husband has been very firm with people, along the lines of… ‘We don’t want to hear about Jack Osbourne or wonder cures from your next door neighbours great aunt at the moment thanks!’ I work in a school and have told all the staff as unless they know they can’t help me but I do appreciate how lucky I am to work in a supportive team. Also as you are finding out its hard to cover 4 months sick leave which has left me with a limp. I’m with Mike tho, 2 weeks in the canaries sounds good to me! Carolyne.

Hi Carolyne The blue badge spot fave is “you can park close to the door so you won’t get wet” I am sure I rather be wet Don’t you love it Mike x

This is an interesting one, as I’ve told close family and friends only as and when the opportunity came up, and I’m now regretting it! Sometimes I just want to stick a facebook status on telling everyone what’s going on, but that’d probably cause more problems! The problem I now have is that (thanks to poor memory) I can’t remember what I’ve said to whom! And helpfully (!) there’s been the usual family jungle-drums beating, and now some of my more distant relatives know a bit about what’s going on. I’m beginning to think it’d be easier to come clean to everyone now it’s official, then it’ll be done and dusted and they can move onto the next bit of gossip! I haven’t really said anything to my children as they’re so young at 4 and 2 - my 4 year old just knows that mummy gets tired and has poorly legs sometimes. He is sensitive though and gets upset when I go to hospital for an appointment :frowning:

Hi Emma When I was Dix I agreed with my wife we should tell kids first. The extreme was I didn’t even tell the I was in hospital. A shi* aren’t I. It was for the best. I disabled my Facebook acct too, still have no re enabled. I found it easier as per last post to tell everyone after kids. Then the uncle drums wouldn’t hurt the kids. Take care Mike

Hi,

Not to sound insensitive here, but god I’m glad its not just me!! I really feel as though I don’t cope very well when talking to people about it. Recently I’ve starting thinking, “it’s me, I’m the weirdo that doesn’t know what to say, not them”.

I had a thought the other day, maybe if I tell people to always ask me an “open” question rather than a “closed” one it would help. So, instead of “Are you better?”, (to which I always think NO, but have to say yes.) maybe “How are you today?” instead. That would give me the freedom to expand on my answer, and not confine me to having to say “yes I’m fine thanks” when I’m really not. Does that make sense? I’m gonna give it a go anyway.

As for telling people you’ve got it, don’t think you can control others reactions. I’m like you and end up taking the same line as “yeh but it’s not that bad, don’t worry.” I suppose its up to them to go away and find out more if they are interested enough, if they do, then they will know its not a good thing to have, and us reassuring them its not that bad they should have a good balance of information then. So I’m gonna keep on with the positive approach.

Like you I’m interested to see if anyones got a better way?? Take care. x

This is so hard. I’m sorry for your poor mum, but I think you need to set her reaction to one side (and think separately about how you can help her to deal with things) and concentrate on what feels right for you. It’s a generational thing to some degree, I think. My parents’ generation spoke of Very Bad Things in a hushed whisper if they had to speak of them at all. And the list of Very Bad Things was a long one, ranging from cancer to a baby who was rumoured to be Not Quite Right to a son who wants to study art instead of engineering or a daughter who wants to study engineering instead of art. My lot had a friend who had been in a wheelchair for 25 years and I never ever did hear what was the matter with her - the subject was absolutely verboten, and this was long before there was anything the matter with me!

What to say, and when, and to whom? I don’t know. I did not say much while I looked normal. Now I’m a bit wobbly, and I don’t work any more, I feel more of a need to explain myself. I usually go for something like, ‘I have some neurological problems, so my legs don’t work so well.’ The second bit is important. If I just use the first, people have been known to think I mean I’ve had a nervous breakdown. I do not think there is an answer to this tricky question that will suit every circumstance. It is important to try to keep a sense of humour when people say jaw-droppingly stupid stuff, that’s for sure.

Good luck with it all.

Alison

x

Greetings

I understand, but people don’t need to know anything. It’s your business. We are not a circus act.

I confide in some people, but only when I choose and if I choose. The rest can go forth.

There are lots of people I work with with complaints, but they don’t take me aside and say “by the way, I have terrible backache most of the time”, or “by the way, I’m neurotic - I thought you should know”.

People aren’t much interested I’ve found. Nosiness is different to being genuinely interested for the right reasons.

Mark

Sorry to hijack, but I’m just wondering if anyone ha any experience of telling younger children about their dx? My youngest wouldn’t have a clue what I was talking about, but I think my 4 year old could know a bit more than we’ve told him so far. How much have you said and how old were they? X

Hi Emma Try this http://www.mssociety.org.uk/ms-resources/our-mum-makes-best-cakes Mike

That’s great, thanks! (shame I don’t make the best cakes for real lol!)

Try bbc…co.uk/food

I was diagnosed two weeks ago after being warned by an opthalmologist that MS was a possibility.

I have told close friends (so that they understand why I need to go home early if I’m tired and to explain why I’m not as active as I used to be).

At work - I’ve told my boss only. He was very supportive and was a bit shocked as he couldn’t tell there was anything wrong with me. I only told him in case the MS caused problems with my work and so I can easily make Drs appointments without rasing suspicions. I guess it’s semsible for times when I don’t feel so good to have someone who knows the situation rather than having to deal with sick leave etc out of the blue. Hope it doesn’t screw up my pay rise chances!

I don’t want to tell anyone else I work with in case I’m treated dfferently or people think I’m not up to the job.

So it’s been ok for me so far - I’m very lucky.

Fade

Thanks for all your thoughts. I know a guy with MS - I only found out cos his sister told me. I chatted about it with him and apologised on behalf of his sister for letting it slip, to which he replied ‘I don’t mind you knowing, I just don’t feel the need to go round publicising it as noone can tell there’s anything wrong with me anyway’ I guess I know where he’s coming from. And part of me wants to protect my mum and my grandparents, as I reckon it would break their hearts. Or maybe because its just more comfortable for me not to have to confront t head on with people… sigh