Hi everyone

Have recently found out something very annoying

I was dx with rrms in Oct 12. I obviously told the people I thought needed to know including some “friends” but wasn’t ready to start wearing a t-shirt with it on or anything.

Recently found out that a friend has been telling people. Including my ex boyfriend who I don’t really get on with.

Why?? I wouldn’t mind that much but my friend doesn’t talk to ME about it but apparently will gossip about me with my ex.

At first I was upset because it seemed a betrayal and don’t want my vunerabilties exposed by a “friend” to my ex of all people. Why aren’t you allowed to let the world know if and when you are good and ready?

Now I’m just annoyed by it. I haven’t spoken to my friend about it because I don’t know how to bring it up.

Am I just being over sensitive? Should I leave it and maybe take away a valuable lesson? i.e don’t trust anyone.

Thanks for listening to a moans! Good health to you all


Hi Becky,

Tricky one this. When I was dx I only told partner and imnediate family. I ended up emailing everyone I knew 10 years later to announce my MS as I couldn’t bear telling people face to face . Think that once you’ve told more than your immediate family then it can become general info that people will talk about. Uness you asked the people you told to keep it to themselves then you can’t really get to upset.

I now get a bit upset that people I thought wiould know through mutual friends actually dont and I have to start explaining everything…

It is upsetting when you find out people know about you and maybe your friend doesn’t want to discuss it with you, I know my friends dont.

Keep well, Jen x

Hi Jen, Thanks for the reply

This is the probelm I did explain that I didn’t want everyone to know just yet.


Hi Becky.

It’s your medical history, no one else’s. It’s nobody’s business to know your medical history.

Like you, I don’t broadcast it. What for? If there was a general amnesty in UK compelling us to disclose I might, but might not. I work alongside people every day with complaints who don’t discuss it over the table. My own ex wife for example, was neurotic but didn’t tell the world.

It wouldn’t be helpful to me and it’s not in the public domain.

Needs to know suits me too. If they don’t need to know, I don’t bring it up.


I tend to tell most people who ask why im walking funny. It explains why i walk like i do and leave it at that. I saw an friend last month who asked if id dropped my wallet as i was walking funny. When i said no, its because i has ms and was in agony, his embarrassment was there for all to see. He could not apologise enough. I brighten the mood by cracking a joke about. Ive let moat friends know as they might something different that i had never noticed

I remember when it was a big issue to tell people. To be honest, I just couldn’t do it but left it to my now-ex husband.

On the one hand I wanted people to know because I needed it explaining why I was suddenly not available to do physical tasks at the groups we belonged to. (Like stand all day on a charity stall or go door to door canvassing for the labour party – all things I’d done the year before) On the other hand I didn’t want to talk about it and I certainly didn’t want to become “poor Jane”

In many ways its easier now – I’m in a wheelchair so my physical limitations are obvious and although I’m sure people want to know it’s not very PC to ask me so I don’t have to talk about it – result!

All I can say is that it gets easier over the years. Having MS is as much a part of me as brown eyes or being short. I try not to make it the focus of my conversations although I know that it is the focus of my life.


Hi, like Wendellls, I am in a wheelchair, so folk can see i have a health issue.

Some ask and I tell `em…but they wish they hadnt when I say

idiopathic spastic paraparesis.

They look puzzled, or embarrassed, or concerned… whatever. They go home, I go home. I`ve spread the word further!

luv Pollx

you know this is personal to us all I have been always pretty open about it hiding the tears inside but afraid what it does is that people think they can say anything, I use to be very polite I however will now put people in their place if they cross the line, and afraid it happens to often now so vent your annoyance here we can appriciate it.

I am sorry that news has leaked out when you did not intend it to, but this does have a tendency to happen, as anyone in news/image management will confirm! Once information is out there (i.e. shared with a few people), it is more than likely that it will get around. In general, people are not very good at keeping secrets. It does not necessarily mean they are bad friends, just that they are human! Try not to let it get you down.


Hi Becky

I had a huge row with my next door neighbour about this 4 years ago. I had only told her and my immediate family as I had just been in hospital again with a severe relapse which led to official diagnosis. When I had had the CIS, the neuro said I should share it with people close to me in case anything else happened and I needed to get to hospital quickly. I felt I had to tell her when I relapsed as she was bound to notice I couldn’t walk and when I went into hospital my mum was stayed at my house to take care of my 15 year old son. She hadn’t said anything to anybody for a few months after the CIS so I had thought I could trust her.

I had thought I was good friends with my neighbour but the day after I came home from hospital, my mum answered the door to the milkman and was astonished when he offered her his sympathy at the news that I had MS. He had been told by my neighbour as we all used the same milkman. Then my dad was working on his allotment and a couple of men from the village knew all about it as well on the same day. My parents were very upset as they were still trying to come to terms with it and they hadn’t discussed it outside the family (neither had I).

At first my neighbour tried to deny it was her or her husband, even insinuating that we had told the rest of the village. Then she couldn’t see what the big deal was. Very frustrating trying to explain to someone who doesn’t seem to care that it is MY news and I will decide when I want everyone else to know especially the milkman!!! Why is it his business?!

Anyway, I never trusted her with anything confidential after that. It changed our relationship and she was acutely aware of that. She also realised how painful gossip can be when her son was in trouble with the law and it was in the local newspapers and she hardly dared set foot outside her house for fear that everyone was gossiping about her family. She had been such a gossip for years and then realised what it was like to be on the receiving end. What goes around, comes around!

Tracey xx

Gutting that someone would talk to others about it when you wanted to keep things quiet and I guess that it feels worse than people knowing about your MS, knowing you’ve been talked about! I’d be pretty angry too.

I did kind of ‘go public’ in one fell swoop for a number of reasons and so I updated my facebook status accordingly (that sounds so naff!) - I have to tell you that it was the comments/messages/texts that kept me together and made me weep all at the same time - I was truly overwhelmed and humbled by the reaction I got

It had already occurred to me that word would probably get round - I’d had to stop teaching classes at the gym and was walking like I was drunk so for me it was a case of just nipping it in the bud, hence I decided to tackle it head on.

You have every right to be annoyed Becky, it’s a shame


Sonia x