Hi all
A simple ask, but could have far reaching implications and potential complications…
How have you told family, friends and colleagues of your ms?
If you have any advice, stories, “if onlys”, I really would appreciate it.
Thx.
Hi Richard
Have you been on the forum for a long time or just joined. Just wondering why you’re asking please. Have you just been diagnosed?
X
I have recently joined, although diagnosed with RRMS a number of years ago.
I see
Once I told my close family and friends I had MS (ppms) I put a short message on my facebook page with a link to this website for anyone who needed more info
I don’t work anymore, so that problem is not an issue for me.
X
the (free) leaflets available from the ms society (see publications on the home page) are wonderfully clear with diagrams.
i read it myself and then used it to help explain to family.
my son was away travelling when i got my dx. he’s an electrician so after a huge hug and lots of kisses i showed him the leaflet with the diagram of damaged myelin.
he said “no wonder you’ve been a bit strange. what you need is a rewire!”
if only!
carole x
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i told a few close friends during the time of my most recent relapse and eventual diagnosis. some were very supportive and engagingly interested. others less so and very eager to change the subject. i am okay and appreciative of both attitudes.
as for work… no one knows and they will not know until i need to justify or explain a situation. same too for my family outside of my home environment. i don’t need them to know and their lives aren’t about to be improved by being told.
breaking this news for me, is based upon a ‘need to know’ philosophy. its just that simple. perhaps i am just very fortunate (so far)?
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Hi
I worked on a ‘need to know’ basis.
There are no hard and fast rules for this, it will depend on your circumstances.
I was very fortunate, work were amazingly supportive and did all they could to keep me going for as long as possible. It was in my interest to tell them as early as possible.
Reactions amongst family and friends varied. It can be very difficult news for those that care about us so be prepared for ‘odd’ reactions and to support them until they have had time to come to terms with the news.
Good Luck
Anne x
I just told everyone. I think it was different for me because I had no symptoms you could really see for years and because I was self-employed when I was diagnosed so there were no questions about what it was going to mean for my employer.
I told my family and friends straight away and have always told new friends as soon as possible. These days I need more help from friends and they have always been absolutely lovely about it - providing lifts, making themselves and me coffee when they come to mine, offering to push my wheelchair to wherever we are going. I would say it’s been one of the best gifts I’ve got from MS, that thing of seeing how great my friends were when I have needed them. Not everyone’s experience, I know.
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Thanks for all these replies. I very much appreciate them.
They are very helpful.
I’ve been completely open about it from the start, no need then to have to make excuses…but I know not everyone feels this way
Rosina x
i dont really have any advice but can tell you what i did. When it comes to illness i dont involve my family. (Past childhood hang ups-illness was not really an option so i dont know how to handle there concern and sympathy((a broken leg age 10 waited got left almost a year when another accident got me taken to hosp!! but i digress) so im no good at the talking thing, My partner thought i should tell them so i wrote an email with information in it and questions hey might ask like can i still drive, have children, work, death etc. and told them all i knew from the consultant and a link or 2 to here. i asked them to treat me no differently i was still me. and it was not a topic for conversation or to go any further. i would tell them of changes and medical stuff when i knew and when i was ready. they would not be left in the dark but could they please respect my wishes. Its me that has MS me that has to live with it (i was worried my mother would be a drama queen and play the "poor me my daugter has ms card!) so with email written and checked and rationalised by my partner, i phoned them up, explained that id had certain symptoms, many medical tests and been diagnoised with ms. and that i was sending an email (whilst on the phone) so they would know everything but i did not really want to talk about it.
As for work i was a live in nanny and the family were involved in the first gp apoinment and referals from there so they knew in real time, (a friend of the others who is a gp with ms had already informed her she thought i should see a gp and thought it was ms) so they were half expecting it there as i went to the apt alone xpecting to be told all results clear and they had no idea why… i did not even know they were looking for ms.
And as far as friends go i told 3 in the first year and a few since then (normally as i get fed up about being asked about work and questions got to difficult to shrug off) but its not common knowledge except to a close few, although i expect more know as people gossip but although in some respects it does not bother me in other ways certain people i cant talk to about it!
what ever you decide to do, i would say think of others and your loved ones but do what is best for you. Its a huge major thing, once people know you cant take it back, but at the same time however disabilitating you are still you.
dont know if thats of any help but what ever you decide good luck.
Thanks for that last post…esp the lines towards the end
“what ever you decide to do, i would say think of others and your loved ones but do what is best for you. Its a huge major thing, once people know you cant take it back…”
Whoever said life was easy!!