Anonymous 03/03/17
Last reply 1 year ago
Who do you tell you have MS?

And how?
And when?

My friends and family tell me that I don’t have to tell everyone I have MS and I agree. However, I think it would just be easier if everybody knew. I feel like I’m keeping a secret and I don’t know why it should be a secret.

I often find myself in awkward conversations because of this. Sometimes I have to tell a little lie or I just don’t say what I want to say because the person I’m talking to doesn’t know I have MS (or worse, one person knows and the other one doesn’t). It’s kind of a heavy topic and I don’t want to make others talk about sad things. If I mention it I feel like I will have to do a 30 minute explanation before we can continue the conversation.

I basically feel like I have to hide that I have MS and I don’t want that anymore, but at the same time I don’t want people to think I’m complaining. I just want it to be normal!

Does anyone recognize this situation? How do you cope with this?

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1 year ago

Completely get it. I find people either over react and talk like I’m dying or under react as in “you don’t look ill” so unless I’m ready for those reactions I don’t say anything that way I know they are treating me the same and my illness isn’t changing their view of me. Once you tell people you can’t untell them. Having said that my family, close friends and work colleagues I share a room with know. At first it felt like the elephant in the room now I just try not to think about it.
It will of course be different if it when I become more physically unwell but I’ll deal with that when it happens.
That it’s what is working for me right now but you need to do what’s right for you.

1 year ago

Hi @floor and welcome.

It is a difficult decision, but the following document may help you :-

1 year ago

I feel as if I’m the boss not ms it’s not ruling my life I rule that. I tell everyone that asks and after a few weeks of trying to make funny story’s up and running out of bullsh1t I decided honesty was best policy and it is. most people say sorry etc and I just reply don’t be it’s not your fault it be Reet. It is alright a few adaptions here and there and thinking ahead for the future jobs a good en. Crack on live your life and you can also tell ms to kiss your arse.

1 year ago

@newbie2017: I so understand all of that! I already feel a lot better knowing that there are other people going through the same thing!

@doubleo7hud: I hope I can get to that point too where I can be just normal about it and tell people.

1 year ago

I’ve been extremely open about having MS but that is completely different from being open about how you feel. I’m happy people know but I absolutely despise getting sympathy or special treatment from people, I know sometimes its needed, but I always felt that people who stuck with me through the journey of getting diagnosed deserved to know as much as me, plus by telling them it hopefully makes them understand that there are times when I just can’t do something. MS is on my mind 24/7, I’ve tried not to think about it but I can’t help it and if I didn’t have those people I could talk to, it would drive me insane.

1 year ago

In the meantime @floor this place is awsome and people here are also awsome vent and get anything off your chest don’t be scared to ask questions etc

1 year ago

Hey @floor and welcome! Like was said above this is s great place to come and ask questions and vent.

I have been completely open about my diagnosis, kind of for the same reasons above. People were there through the process of diagnosis so I felt they should know the outcome. Plus I am rubbish at keeping secrets. I am a say it like it is person and much prefer people to be upfront and honest with me, so feel I should be that way in return. But not everyone will react the way you think and well as said above once you tell you can’t untell. So you just need to be prepared for that. But it does make you see who your real friends are, truly you see who is there for you and who isn’t. For me anyway it has been quite the eye opener. But maybe that’s just me and maybe I am a bad judge of character. Just be careful cause it really hurts when someone tell you they will be there for you and this journey and then they just disappear from your life without explanation.

But don’t let my experience put you off, just be careful and prepare yourself. Like I said maybe I am rubbish at picking friends. I hope you have a much better experience than me.


1 year ago

I hid it for years that was a bd idea, but I still pick & choose who I’m completely open with, all the above MSers are spot on the people reactions are so varied

but one thing I did learn
a chronic illness will show you two things:
the amazing compassion from some people you hardly know at all,
& the disgusting selfishness of some people you thought you knew really well.

which is actually really positive & usefull, as you begin to understand who your true friends really are.

1 year ago

Well said @tog1 – hope you are keeping well?


1 year ago

Hey @averilt yes I’m keeping, keeping on you know how it is 😜
Trust you’re battling on too

1 year ago

Right from the start I just told anybody who interacted with me enough to notice something was wrong that I had MS. Its an illness thats all. The family know, people at work know, friends know and neighbours. I was only diagnosed last year but have had progressing problems for the previous 2 years, so people have noticed that I had something wrong. Letting people know that you have MS makes most situations easier to deal with for you and them so run more easier. If they ask for more information then I offer it. One person at work was asking because their friend was in the process of being diagnosed with it.

1 year ago

I have recently told close friends and family. Most have been supportive but I haven’t talked to some of them directly. I had to use email as I live so far away from family. I knew it was the best thing to do. Some of them would not support the choices that I’m going to make for treatment and that is ok. I basically told them to get it off my chest. I will discuss with them if they want to but on my terms. I feel so much better having just told them and I leave it at that. It is difficult but I think those that are true friends will support you thru thick and thin and they probably already know if you were ill, etc. You’re not alone!

1 year ago

I have been completely open about my diagnosis and it has been an entirely positive experience. I was baffled by the advice online and elsewhere suggesting not to tell people, as I really don’t understand why it should be a secret. Although I totally understand that it is a very personal thing and what works for me won’t work for everyone else.

I did find that just after my diagnosis I was too emotional to tell everyone in person, so I decided to let people know via a Facebook status. I had an awful lot of very wonderful and sympathetic messages. Of course many people said they’d be there for me, “just call whenever you want to meet for a chat” or wherever, and not all of those people turned out to really mean it. But I didn’t feel upset by that, though I do now know which friends really ARE there for me.

I would say that in my experience, people respond very much to how you are around them and how you tell (or show) them that you are dealing with the illness. If you don’t want help or sympathy they will very quickly realise that and start treating you just as before again. I honestly think most people have no idea how to react or what to do. I know I don’t know what to say or do when other people are ill or have traumatic things happen to them.

Personally, I think keeping it a secret would add an awful lot of stress and worry to my life. Like @doubleo7hud I find being open about it helps me be in charge of my MS and not the other way around. If you think telling ‘everyone’ will help you then I’d say go for it – don’t worry that people may think you are complaining. So what?! Even if you are, you do have a serious illness and have every right to complain on a bad day. I feel that this is my normal now and by telling people they realise it too.

Oh and also, an unexpected bonus of my Facebook announcement was that it turns out a friend of a friend also has MS and I would never have known. I knew who she was but didn’t know; we now meet up for a coffee and whinge about MS every few weeks and it’s done me a world of good!

1 year ago

Good Morning @floor and everybody else in MS world, as everybody else has said it can be tricky as to who you tell, but I feel it depends on the type of personality you have. Me for example I always try to have a smile on my face despite the pain so I find it easy to just tell everybody, at least that way on days when I’m not using my stick they know that although I may look drunk, I’m not. Sometimes my friends do look at me in a “why tell people” way but as I always say “it’s a genetic illness not something I’ve caught, if it was an STD then I’d be embarrassed”. Anyway chin up and all the best. Graham

1 year ago

Thanks for your kind reactions everyone, you have truly “shifted my outlook” 🙂

1 year ago

I started a big new job five months ago (6 months post round 1 of lemtrada). I was pretty open from early on despite being free of visible symptoms. Glad I was as I’m now mid relapse but working through it. People have been great – if I’m matter of fact about it, so are they. MS is part of me but it doesn’t define me and, frankly, I’m too busy getting on with life the best way I can to worry how other people deal with MY condition!

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