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Who did you tell?

Hello everyone,

I just got diagnosed last Thursday and I am still I think a bit numb from the shock, but I am also stressing about who I should tell that I have this diagnosis. So far only my husband and teenage daughter know, I haven’t said anything to anyone else. But it is literally all I can think about!

Should I tell my boss? Friends? extended family?

i have this strong urge not to tell anyone but it is such a big thing that I feel people ought to know.

Who did you tell, when you got diagnosed, and did you tell people straight away or did you wait to get used to it yourself first.

And, how did you tell people and what did you say?

looking forward to hearing some of your stories if you want to share

Anjo

I was mistakenly diagnosed as having had a stroke, first… that was a bit of a punch in the guts, and only five months later did they decide that it wasn’t a stroke, and the diagnosis changed to MS. I had to tell the DVLA (that was no problem only they had to take away my indefinite licence and replaced it with a three-year one instead) - and I told work, so they could make ‘reasonable adjustments’ to my duties, hours and working conditions. I don’t think you’re required to tell work, but it seemed a bit daft not to… and when I started carrying my stick, nobody was surprised. I occasionally get asked what I’ve done to warrant the stick, and just say “Oh, it’s for when my MS is playing up…”

Hi Anjo,

my Husband was with me when I found out on the Tuesday 24th October. My sister was aware that I was going for the appointment so I went round and told her afterwards. I then told my daughters (12 and 28) separately at the weekend. With them I told them that I had been diagnosed with Multiple Sclerosis but that firstly I wasn’t going to die and that there were a lot worse things that it could have been, secondly that it wasn’t genetic and thirdly that although I didn’t know everything about it they could ask me anything and that if I knew the answer I would always answer truthfully.They took it really well.

The worst person to tell was my Mum who wasn’t aware that I was having any tests but I told her in a calm upbeat manner and I showed her this website and the MSTrust one and although I know she will worry she seemed ressured by my positive attitude (she is a born worrier hence the fact that I hadn’t mentioned anything previously). I decided quite soon that everyone that I am close to needed to know, but that’s me. I let my husband tell his family. Everyone that has been told has been overwhelmingly supportive and for that I feel incredibly blessed.

The only people I haven’t told that maybe I will need to is work but I started a new job on the 29th (appalling timing!) so I am biding my time and will tell them when they ‘need’ to know,

Although it hasn’t been pleasant I have found telling people a positive experience. just realising how much people care and to me it feels like a huge relief to have it out there.Now I can just get on with it!

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Belle

That is a brilliant answer. And you’ve found the right ways to tell all the most important people in your life.

Sue

Thanks Sue x

Yes thanks Belle and Fracastorius for your lovely answers, I need to just remember that people mostly care and they will want to know, and if they know then they can offer support if and when I need that.

Anjo

I shared with everyone I knew, started with closes family’s & moved outwards. I have found it the older people are the harder they seem to take the news (93 year old gran was the hardest). I just thought it would easier for those closest to me, I.e kids/ husband/ mother if they could talk about it openly as and when they felt the need. Work was funny, I told a few people & that it was no secret, must of been the slowest bit of info to go around ever. Frustrating as I had hoped to not need to explain to too many people. Due to 4 weeks off work & a number of my symptoms I needed my colleagues to know.

Typical eh Sarah? I worked in a huge organisation (thousands of staff) and a girl got her arm stuck in a vending machine whilst trying to retrieve her kitkat that the machine had failed to deliver. The news went round the site quicker than it took for the fire brigade to arrive with their cutting gear! Poor girl must have been mortified everyone knew! However when I told colleagues that I was leaving because management refused to reduce my hours they told no-one! I had to tell the girl I sat behind I was going on the day that I was going!!!

Sarah and Belle, it was like that with me at work too. I told bosses and close colleagues in my (big organisation) workplace at the start and never asked anyone to keep it to themselves, assuming that this would be an easy way to get the word around. Wrong. When I was medically retired eight years later and sent an email around to tell the internal contacts I dealt with regularly, most of them were astonished to hear that I had MS!

Alison

I just told people in a need to know basis but I did tell work straight away as I was dx with secondary progressive and thought it would become obvious quite quickly and it did.

Eight years later it is just part of who I am and people do respect the fact I do struggle and on the whole they are pretty good.

I work in the cash office of a supermarket and need to go out on the shop floor at times. I don’t think a day passes without some customer asking what’s wrong with me ( I even had one that wanted to prey for me and I’m an atheist ) it’s so annoying and really can’t be bothered explaining to people and I find old people are the worst. They seem to recoil in horror and then get a pat on the back in sympathy. Short of having a sign with I have ms round my neck I suppose I just have to put up with it.

Mags xx

I told everyone. They will only hear it from someone else otherwise.

It`s better coming from you.

No one has mentioned the one legal requirement on diagnosis; the DVLA. Your insurance; if you drive is not legal to tell, but it stands to reason if you do not tell them they can wriggle out of a claim.

George

Never; ever be ashamed of getting MS; IT IS NOT YOUR FAULT. I strongly suggest you tell your boss; ask to be kept a secret if you want? Then you will come under the Equalities Act and will be eligible for Reasonable Adjustments; In employment: Workplace adjustments | Equality and Human Rights Commission

Most of all it stops Chinese Whispers, You don’t want people jumping to conclusions. If you’re wobbling while walking; you don’t want some clever person saying to others “look, she’s drunk again.”

Don’t worry my darling, time and tide.

George

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I felt compelled to tell just about anyone I came into contact with!

For work colleagues I tried to arm myself beforehand with knowing a bit more than I expected them to, if that makes sense. Most people knew there was something wrong and received the news with a comment along the lines of ‘Oh, sorry to hear that’ and that was it.

The most helpful comment was ‘Well I’ve heard of MS of course, but I don’t really know what it is’. I explained that I didn’t know a lot at that stage, but it is an autoimmune condition that affects my central nervous system, which in turn will cause many and varied symptoms.

I continue to use that stock response with everyone else. My employers are great, very flexible with my work hours and time off sick (just had Lemtrada so took several weeks off in August).

Tell the DVLA (if you drive) and insurance companies.

Re family - siblings are statistically slightly more likely to develop MS than other relatives, so I told them to be aware of anything unusual in their own health, and also so they could inform their GP’s if necessary. My family are very down to earth so I had no extreme reactions or panic.

I only found telling people stressful if they assumed or ‘knew’ how awful things were going to get. You will always get the odd one who catastrophizes and loves to share made-up horror stories. Or ‘helpfully’ passes on miracle cures then gets annoyed when you don’t fall at their feet in gratitude.

So, try not to stress about other people, do whatever you feel comfortable with.

AngC xx

Thank you all for these great comments, I have decided to follow what most seem to recommend, which is a general policy of openness. The worst thing is I already have a serious psychiatric illness, schizoaffective disorder, and everyone is going to be thinking, what MORE do you have wrong with you now!

It’s funny, I have always had a policy of openness with the schizoaffective illness, because I felt I needed to show people that you can have a mental illness and still lead a full and productive life, but this MS has stymied me. I also worry that friends and family are going to get compassion fatigue or just write me off. But I guess that is a risk I will have to take.

Thanks again for your thoughtful and helpful comments, I am new to this forum but the support and advice is amazing.

Anjo

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Looking on the bright side, you have form for dealing gracefully with one serious illness, and that can only stand you in good stead as you start to deal with another. I wish you well.

But hell’s bells nevertheless - that’s just damned bad luck you are having with your health, and I just wish that life were a little easier for you.

Alison

hell’s bells indeed!

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