As in are lots of people aware you have MS? I’m still have “invisible” symptoms, which unless you know me you wouldn’t spot, but it’s affecting daily life and my close friends ans family know and are lovely - but what about the next tier of friends? I work in my community and I don’t know whether to be out and proud or not. I guess it’s only a matter of time. If they knew I might go from “that flakey mum” to “I don’t know how she does it all” mum
my missus knows, coz well she was there with me through the entire pre-diagnosis anxiety and post-diagnosis acceptance.
plus i felt she deserved to know about everything straight away as it might have profound impacts upon her life and thus the decisions she needs to confront.
Aside from that, one person at work knows because he has always been very open about a similar set of medical complaints he contends with.
Other than that, no one. i do not feel they need to know, nor would they benefit from knowing anymore than i would benefit from telling. i don’t need the sympathy nor the efforts at support.
once i get to a point where my symptoms are overtly obvious, then i will ‘matter of factly’ let the flakey cat out of the bag… but right now, i am indulging the optimism that that day never comes.
if you feel the need to share, then no one can tell you that you shouldn’t. but for me personally, i would prefer for any public awareness to come posthumously
I stayed ‘in’ for a very long time before plucking up the courage to ‘come out’ (Who knew such a problem even existed?). And when I did ‘come out’ the news travelled at the speed of gossip, but in a good way.
I could have done with a bundle of leaflets explaining the condition, folk have very different ideas of what MS is, and it did get a bit tiresome repeatedly explaining things.
Take your time ‘Seashells’ and do it when you’re ready.
It’s easily done though isn’t it…if I “like” this page on Facebook, everyone sees that you have, and then the hospital stays and erratic behaviour starts to fall in place. Work had to know as it affects my hands so immediately affected my work. It’s a private problem but it becomes public when you have to warn schools, work etc etc or someone watches you fling a glass of wine to the floor by accident
I don’t keep it a secret but then I don’t shout it from the rooftops.
For example, we have some customers coming to work for training, part of which is a walk looking at the lights of Durham. Now because Durham has a lot of steep hills and I have a problem walking downhill, I will take my folding stick. So far I have not had to use it but its always better to have. So of course I will be asked why I have the stick. I normally tell people its a problem with my knees but everyone in work knows the truth.
You do what you feel is right for you hun.
I’m out Seashells
I am quite comfortable about people knowing I have MS. What they actual think, is of no real concern to me, unless they are important to me.
I get good support from close family/friends, that is enough for me.
All the best with whatever you decide.
Aye oop. Out is good as when you talk to people you’ll find that everybody knows somebody with MS.If I’m talking with somebody for the first time I always tell them I have multiple sclerosis and repeat it a couple of times before I say MS.There are lots of abbreviations out there and we don’t want to confuse peeps.There’s ME,TB,OCD,VD, to name a few.
Oh,finally,you must never let vanity get in the way of coping with your version of MS.If you need a stick,holy roller and god forbid a scooter one day you’ll be surprised how understanding the great British public can be.They like a fighter.
I too have invisible symptoms and until now I had only told family and close friends, but I have been off work for the last six weeks due to another relapse so more people now are being told . I do feel however they just look at me and think i am
making this all up especially as only a few months ago I was in Austria on a walking holiday . I also find it exhausting trying to explain MS , I wish I could find a leaflet that would give an easy read explanation of this illness so I could hand out and save me going through another exhausting process.
All the best with whatever decision you make .
Oh I can’t keep it in, Cat Stevens (aka Yusuf) style.
Personally I found it helpful to let it out, balance issues and foot drop were difficult to disguise as I’m not known as a heavy drinker .
Only you can decide when it’s the right time to tell people, although I would let an employer know so you’re adequately protected in terms of their insurance and against discrimination.
Best of luck
And for those too young to remember http://youtu.be/0W_SGoBFJxs
As there is no legal obligation to disclose (except in certain very specific situations - a firefighter or a pilot might have to), it cannot invalidate the employer’s insurance. They could have any number of people with undisclosed conditions working for them, so the insurance premiums will reflect that already.
If it did invalidate their insurance, it would be a way of making disclosure compulsory by the back door, as no employer would hire anyone without full medical disclosure, so any pretence of it being voluntary would be lost.
I do think there are very good reasons for telling your employer, just that insurance isn’t one of them. The law doesn’t say you have to tell, so you’ll have the same cover as everybody else, whether you choose to or not.
If I didn’t say, people would think that I had drink taken, even when I don’t.
For me, it has always been a matter of just playing it by ear. For each individual person or part of one’s circle of family, friends colleagues, acquaintances, I do a sort of background calculation on the pros and cons of telling them, and go with that. As time moves on and it becomes more obvious that there’s something the matter, the calculation is more inclined to come out on the side of just telling people.
Having had PPMS for over twenty years I have gone through the whole gambit of shall I shall I not it started with the walking stick then two sticks one crutch two crutches onto zimmer and wheelchair. Each has its own embarrassments and I have long forgotten them because of the benefits each brings. I am OUT and proud I have MS and will tell the world.
I’m definitely ‘out’ at work as I had my first symptoms here and they were a bit hard to hide - slurred speech right before Christmas 6 years ago. I’m sure some thought I had been at the booze a bit early ha ha. I didn’t come out for a little while but then I decided to do a Cake Break to raise funds and so I told my story and the funds rolled in. It’s surprising how many people know someone else with MS but everyone is different so I use it to educate people too. If I had known just one person like me who doesn’t seem too badly affected by it when I was going through diagnosis it would have really helped. Of course, when I have a relapse and can barely walk then it’s obvious something is wrong and again I use that to educate my colleagues that for some MSers it’s like that all the time and for others it’s a temporary thing.
Most of my friends know about it but when it comes to acquaintances or Facebook friends that I haven’t seen face to face for years then it depends on the person. I only tell them if I think they will be okay with it. I don’t cope well with lots of gushing sympathy.
Thanks for all your replies!
lt’s proving hard to keep even from peripheral friends as I was due to start Lem trada recently but it fell through, and as that is a week long Hosp trip and immunosuppression afterwards, it’s made planning for Xmas/kids/work v hard (next week poss)
tbh it’s one of those things I never even thought about having to think about iykwim! Who knew such decisions had to be made in life!