Last reply 1 year ago
When To Tell Friends?

Hi everyone, I was diagnosed with MS in October after a couple months of uncertainty. I was just wondering how you decided who to tell about your MS. I have been having trouble with this lately. My Immediate family knows, and I did tell my close friends about the symptoms I was experiencing before my diagnosis, but then I told them I did not want to dwell on the issue. My close friends still don’t know I was officially diagnosed with MS, but at the same time I don’t want to tell them because I fear they will look at me different and treat me differently. I also don’t want to lie to them or feel like I am keeping something from them.

Any advice would be appreciated.

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1 year ago

I personally told my firends when i no longer could disguise it…… they are educated people so i could not lie to them. But I have not said it in the school were my children go to. They know i have trouble but they don’t know what. Better like that for few reasons, i hate the idea of children saying to my children horror histories, kids don’t know what they are talking about some times, i did not want them to be bullied…..also i did not want the idea of people looking at me with pitty , or patronising, they have no clue what ms is and better if they don’t get involved. Honestly nothing has changed i feel happier that way. People try to help they are nice but as i said better if they dont know it is ms, the best thing the can do is treating me like normal.

But i must say that life was pretty tough before telling my friends! Pretending things were fine was a killer, now everything is so much relaxed, it took me 2 years to accept it and now i feel even cool when i drive my scooter or I am in a wheelchair.

It is a very personal decision i think. You will know better than enybody when it is the right time. Take care x

My people were my rock.. I didn’t take the news very well so I told everyone about it that was close to me. I also was diagnosed in 2016 and I find it’s making me very tired all th time so I found it best to tell my friends so they didn’t think I was trying to ignore them or not want to do anything with them so they would understand why I couldn’t go out sometimes and why I would say I was going over then cancel. They will be very accepting 🙂 and it wouldn’t hurt to throw in there that you are nervous about being treated differently.. 🙂

1 year ago

I told my friends when I was officially diagnosed because since it took so long to get diagnosed and they could tell things weren’t right and they tried to help, I felt they deserved to know the outcome and by doing this, hoping they understand and stuff will be harder for me to do from now on and I won’t always be up to doing stuff. At the end of the day, I don’t think I could’ve gotten through it had it not been for my friends.

1 year ago

I never said anything until I was officially diagnosed, mainly because I had no idea it was MS, not until the very day of diagnosis.
I have told my family and anyone I am in regular contact with. It didn’t turn out to be a big deal. Those that wanted to know more about it, I told, those that didn’t, I left it at that.
It makes life easier having it out in the open.

1 year ago

I Facebooked it..telling everyone to never mention it again!!

1 year ago

Hi, I am nearly 6 years since diagnosis . I keep it to myself,- few friends know so I can rely on help with my 3 and 6 year old if needed. I’ve got rrms. ive been lucky that it’s not obvious unless you relapse !!?. I can’t bring myself to say it, I guess I’m a worrier what people would think.. so silly I know!! Most people look at the worst case( or is that me just thinking that!?) I agree it’s very personal too and whenever time is right x

1 year ago

Thanks for the advice everyone. Since a few of my friends do know I have had symptoms, I am leaning towards telling them soon. I do not want to keep those in the dark that know about my symptoms, but do not know of my diagnosis.

Your advice has been encouraging.

1 year ago

Hi @noah, this is something I really struggled with (and to be honest still do). I have been very picky about who I tell, because once you have told someone you can’t take it back. Key criteria for me included wanting to be sure that the people I did tell could be trusted to keep it confidential and also that they would not overreact and would have a positive, supportive attitude. I was getting really worried about it and spoke to my MS nurse who gave me some really good advice: She told me that when you tell people, they will be watching you for cues about how they should react and actually it is up to you to take charge and set the tone of the conversation and tell them what reaction is expected. That advice has worked well for me.
I came up with a plan for who I wanted to tell (very limited friends and family) and also who I felt forced to tell (ie a few at work). I told people individually rather than as a group. I gave it the most positive spin I could and explained how I was trusting them. I also made it clear that I only wanted to hear positivity back and that in so far as possible I want it to be “business as usual”. I told them who else knew, so they had someone they could discuss with if they wanted to and also that it was not to be disclosed to anyone else and that it was only ever for me to do the telling.
I have found it helpful sharing the news with the closest friends who met my key criteria. They have checked in with me and accepted that sometimes I might want to talk about it and other times I will deflect and move the conversation on. They have also helped to shield me from the people who I have chosen not to tell. I am lucky to be in good health and generally there would be no reason for anyone to suspect there is anything wrong. But when one friend who doesn’t know was guilt tripping me because I hadn’t called in to see her and the kids, the fact another one, who knew that the week after lemtrada I was exhausted and had no immunity to the kids’ germs, was able to reassure me that I was doing the right thing, made me feel better. I am very independent and don’t like accepting help but am slowly learning that sometimes you have to and actually for people who love you, letting them help you is important.
So I’d say tell the people you love the most and give them the chance to love you back. Sounds like they already know about the symptoms and they are probably already quietly worrying about you. Be clear with them about the attitude you expect and remember: at the end of the day it doesn’t matter if the glass is half full or half empty, the key point is the glass is refillable (with whatever your beverage of choice may be)! Good luck. Cx

1 year ago

PS, yes, I know I am a control freak (not the best combination with MS)!

1 year ago

I didn’t take the news well and kind of ‘leaked’ information – but not to the extent that I told anyone whom I now regret telling. One of the things that I found problematic was that it felt really difficult to break the news to friends who didn’t suspect anything was amiss – it felt like placing a big burden on them, or at least like putting them on the spot to respond to news they either didn’t know much about or only knew horror stories.

I don’t feel though as if people treat me differently and it is important that people around you know so they can support you if you need it. I haven’t come to terms with my MS just yet, but the long term plan really is to be relatively open about it and be as much of a role model as I can be. However, it’s not supposed to take me over as a person or be the focus of too many or too long conversations. So, am currently thinking of a shorthand that will allow me to let people know when I’m having a bad spell without having to go into details (my favourite at the moment is code word ‘Halloween’ as in ‘I eat brains, BRAAAAIIINS’ – sorry very dark humour, I know).

This article that inspired me to be open about MS is from one of Shift’s trustees:

I think we as the MS community have some educating to do – the general ignorance or misconceptions about MS can really do with a shake up.

1 year ago

@clare80 is spot on…telling people individually, with a “business as usual” approach, and letting them know who else is in on the secret so that they can confide in each other if need be. And that the only person who had the right to share this information was me.
Guess I’m a bit of a control freak too ?
The only time my plan went wrong was when someone walked in on me getting coached by one of the docs I work with on how to do manual injections…that was a bit awkward and required some quick explaining, lol.

1 year ago

I was diagnosed with RRMS 16 months ago, but likely had it for at least 4 years prior when the symptoms were mis-diagnosed. Other than my immediate family and two of my oldest friends i haven’t told anyone. I find it easier to carry on as normally as possible. There are days when it’s hard, mainly fatigue but until it becomes/if ever obvious no-one need know. Everyone has problems, whatever they may be, I feel this is personal to me an my close group of confidants respect that.

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