Forum

Telling people

Me again… Just wondering how soon you told people if at all other than close family and friends? At the moment we are about 2 weeks in since diagnosis and have only disclosed this to my partner obviously, Mum, brother and 2 close friends. My boss knows but has not discussed this further at work (I am still off sick at the moment)… I’m finding the telling people part a massive struggle to be honest. Lee

Hi lee I’m struggling with telling people also. I don’t want,to be treated differently or pitied or anything. I’m fiercely proud and hate what MS is doing to me. My husband and mother know. A few very close friends but I can’t bring myself to tell the rest of my family etc. I’m sure I would get great support if I told the people who matter but I don’t want to be the girl with MS- everyone watching and speculating about how bad I’ll get or how good I look!! I’d rather just remain the same old/young me!! I might tell people when I have to. Hard to hide why I’m in and out of hospital though… Good luck with decision, I’m only elling you what I have done- by no means am I an expert. xxx

Hello Lee,

I can totally empathise with you on the whole ‘do i or dont i?’ problem. I also went through this and know that it brings up all kinds of questions and emotions…I started off hiding it best i could apart from (like yourself) the people who had to know such as partners and bosses etc…However, the more that i tried to keep this horrible, heavy secret the more I felt that my confidence was being sucked away at me. I personally actually started to feel much worse about myself and as if i had to apologise for simply ‘being’. if this makes sense? It got to a point where i actually fely really embarrassed about having MS :(ord This in turn effected my confidence and cant remeber the word now but -how you feel inside about yourself. Hope this makes some kind of sense?

I found great support and comfort on these boards, ty again btw all concerned :slight_smile:

I also found the part that on these boards that the younger people come on to, really helped me to put things into perspective. some people on here you see, have had ms all or most of their lives. so they never got a choice to ‘hide’ their disability or not. yet they just found a way to live with it and be proud of their achievmants with a disabilitythen the last help was from a childrens in need programme that showed again, young peoiple who had all kinds of illness and disabilities but simply ‘got on with it’ and celebrated all that they were because of it.

it was a very humbling experience i can tell you hun but i so needed to see and read and hear it…

Yes of course the first couple of times that i mentioned that i had MS was really uncomfortable and awrkward. i wont lie to you hun. but a friend really helped me with this when she said to me 'what on earth have you got to be embarrassed about? its not like you asked or caused this on yourself, get a grip and start living again woman!!!

after her saying this to me, i tried every day to at least tell one person; regardless of who they were. as in a shop keeper or bus driver etc that i had MS as a kind of therapy. each time saying to myself in my head, i have nothing to be ashamed of!!I am pleased to say that it has gotten loads easier now and i no longer feel as down as i did when diagnosed first. I feel now as if i am part of the human race again as it were. anyway i really hope this makes sense hun n hth you…

good luck and god bless hun

Anna x

Oh Anna That makes so much sense… Thanks for sharing. I know it’s not my post but really helped me too. I’m thinking about sharing a bit more because its eating away at me and so hard to hide. Feel guilty making up excuses about hospital. I’m sure people must think I’m pregnant or something… Be embarrassing if someone asks if that’s the prob! xxx

Hiya Anon,

Oh I’m so glad that it helped you hun. I only know about this due to the good people on this board and in my local MS society meetups etc.I was just so grateful to have that horrible ‘sorry for breathing’ feeling lifted from my shoulders by what people said to me here. I do think its a personal decision though in the end when you decide to let people know and what people you let know…

so plz dont think i am telling anyone how they should be hun. i know myself that we have to reach these things in our own time and way.

all the best with the future hun

god bless

Anna x

You do not need to tell people unless and until you feel like it.

Beyond close friends and family and work colleagues, I kept things low-key for years (although I never told anyone to keep it to themselves). To be perfectly honest, it was years before I could mention the matter without my lower lip quivering, so that was one of the reasons for keeping quiet. Things only really changed years later when I was medically retired and not walking so well. Only then did I feel the need to explain away the fact that I was (a) wobbly and (b) not at work. When it is completely bleeding obvious that there’s a problem, people are bound to wonder, and it is sometimes just easier to be open about it.

Do what feels right for you. There is no nice way of dealing with it, I’m afraid, but deal with it you will. No rush, though.

Alison

I’ve never tried to hide my condition. I didn’t tell my dad initially when diagnosed cause I thought it was something he should hear face to face when I was home for Christmas, it also gave me a chance to inwardly come to terms and to do some research so he would not be as alarmed as I was.

The only two people I did not tell were my two grandmothers who were both alive at the time cause I thought they would immediately have assumed I was headed for a wheelchair and that my life was over. I just didn’t want to worry them. 12 years later, still no medication prescribed and I’m off to dance class tonight, no worries required

If I have to tell someone about my MS I just say it as a matter of fact and try not to make a big deal out of it. You will find a way that suits you best and who you want to tell as well so try not to stress too much. You are probably still coming to terms with it all yourself cause its only been a few weeks but once you have your thoughts straight in your head it will all get a bit easier.

take care

JBK x

I was the same - determined to be ‘just me’ for as long as possible so only told close colleagues so they were aware why I had to keep going home to rest after a month’s sick leave, parents, child, close relatives and close friends. One close friend felt the need to share my business with other’s in the village so I never trusted her so much after that and we did have words!

Somehow it became like a guilty secret though, and I almost felt ashamed about it. It was only when I was much better over a year later, when I was holding my second Cake Break at work, that I went public to all my colleagues about why I wanted to raise funds for the MS Society. The support I received was fantastic (and I raised double the amount compared to the previous year’s Cake Break) and from then on whenever they saw me looking tired or walking a bit funny they were understanding but not pitying.

After that I decided to be more open with people. Not random strangers but in any situation where I might need a bit of understanding or help. The more often I say ‘I have MS’ the easier it becomes. In fact I often give it its full name as there is still a lot of misunderstanding about it and people don’t know what MS is. Like Anna above, I decided to stop feeling ashamed about it - it’s not as if I did something wrong to get this disease, it just happens and it’s unfortunate. Most people are fairly understanding and if it gets me the help I need on a bad day then that’s a good thing.

I’ve even started carrying an MSS hessian bag to work so when I stagger there at 8.20am my neighbours don’t assume I have been drinking before I start work at a high school! Although some days that would definitely help … :wink:

Tracey x

The first few times of telling acquaintances/strangers are horrendous but you become very used to it. I must admit that in the early days I used my now ex husband as an information conduit because just saying “I’ve got MS” was so hard. Nowadays I think of it as no more than “I come from Yorkshire”. (That’s with 20 years of practice mind you!) I felt that I had to be open about it because I was active in quite a few organizations that did charitable work. I needed to explain why I couldn’t stand on a stall all day or serve tea to pensioners. To have said nothing would have left me open to grumbles from the others who couldn’t understand why I was no longer pulling my weight.

I will give one warning though – EVERYBODY knows someone with MS. As soon as you mention that you have it pin back your lug holes to hear about great Auntie Matilda or the next door neighbour’s neice. Those people will either show no symptoms or be at death’s door.

Jane

When I first found out, I’d been taking a few weeks off in my part-time job in a gym so I had a lot of my students texting/messaging me, as well as family and friends so it had already started getting a bit difficult so after I’d told my nearest and dearest, I bit the bullet and posted on facebook - it was overwhelming the support I got from people and sort of helped in the weirdest way as I cried every time I read the comments so I focused my upset in one place really…

Then I was told it was likely PPMS and that was a whole new ballgame… telling my nearest and dearest was far far harder - trying to explain to my sister why I had absolutely no medication and didn’t see my neuro for another year was a toughie, she was soooo angry, so again, my anger just drained away hearing how angry others were, it did make me far more emotional than my initial Dx.

I realised I could never teach pole dance classes again so once again, I announced on facebook, closed my group page and had quite a major cull (that was weird, therapeutic on one hand and tearful on the other).

As people don’t generally understand PPMS, I get the odd “hope you feel better soon” comments but generally people are supportive. I’m a contractor so there’s a LOT of hearsay between people as we tend to work with and know the same people - I heard from a good friend that she knew I was using a stick from another colleague.

So yes, you can keep it as private as you want… For me, I’d rather have some control than let the rumour mill take over! I knew it was going to be difficult so I possibly went a bit overboard with putting it out there but truthfully, (as I was getting a little confused generally anyway) it did kind of make my life a bit more simple.

Sonia x

Oh, and Jane is spot on with that one! :wink:

Sonia x

Hi Lee I was diagnosed at the back end of July and I still have trouble telling people. I have only told a few people and I found that really hard. Reading the other responses you have had to your post has helped me slightly but I still do not have the courage to go and tell everyone. I am having a relapse at the mo and thankfully I told one of my closest friends as she has been able to help by doing a bit of shopping for me and another friend is bringing my children home from school. I am sure it will get easier in telling people, but only tell who you want to and when you are ready to, as it is so true everyone seems to know someone with ms! Take care Karen x

Hi Lee,

I only told my partner and parents as I had no visible symptoms.

10 years down the line i started having problems walking - was making excuses to avoid going on walks/dancing etc.

Sent a mass email out to all my friends/work colleagues etc. Explained all about my MS and asked people to treat me the same and I would ask for help if I needed it.

Response was wonderful - people had a chance to take it all in before they emailed/phoned/saw me.

Meant everyone knew and I didn’t have to repeat myself lots of times.

Jane is right … i just answer with ’ oh yes, it’s so common!!!’ - makes people laugh and takes away any embarassment.

Stay well and good luck

Jen x

I never tell anyone. Why? It’s personal and nobody’s business.

You will know when the time is right for you to tell whoever you want to tell. It’s taken me 3 years to get my head round this blinking disease and only now am I beginning to feel that I want to be open and let the people I work with know why I’m walking as though I’ve downed a few bevvies before coming to work, or having to quickly sit down so I don’t fall through the dizziness and imbalance. Do what your heart tells you and don’t feel guilty, whatever you decide to do.

Good luck with your decision. xx

I have only told family (mum told most of them for me…) and close friends as I still have the lip tremble / wobble 3 years after dx. Some colleagues know but not all as some (TAs) are parents too. I really don’t want to be the subject of playground gossip or to give any with an axe to grind any perceived ammunition. Whatever feels right for you really - after 2 weeks I was still in shock / denial so don’t make a hurried decision. xx

Hello Lee

My husband and two children know of course and close friends.

Family on my husband side know but I’ve chose not to tell my own brothers and sisters…I may change my mind one day.

I don’t really think they’d be that interested and I can live without them knowing.

I’m happy to let people know I’ve got ms if I’m in a situation were I feel I need to. I can get quite confused with my thinking and speech so feel better just letting people know.

Noreen

hi

i was dx the week before my 50th birthday.

the diagnosis was a relief because i’d seriously thought i was going mad.

so i arranged a big party in a greek restaurant and invited all the people that have been close friends over the years.

it was a good mix - from younger friends and relatives to my dad and some ageing hippies!

then i told my sister (the local party animal) and told her that she didnt need to keep it secret (because she can’t do that) so that dealt with all the people in my neighbourhood.

a few weeks later i was walking down market street with my walking stick and someone rushed ojut of the wetherspoons and gave me a huge hug and a sloppy kiss on the cheek. thanks john!!

good luck and i hope that people are supportive

carole x

Love your story Carole…bet that was some party. Noreen B-)

Thanks for all your advice. Jane I love your reply!