Who did you tell about your diagnosis - and how?

New diagnosis and before diagnosis
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Hi everyone,

I’m new to this site, so by way of introduction, here’s my MS story in brief: I was diagnosed in October at the age of 30, but the first signs came almost seven years ago with a couple of episodes of sensory symptoms (tingling, blurry vision). At one stage I had an MRI and was told it showed ‘slightly more white spots than we would expect for your age’. But MS was never mentioned - and I then went around three years with no symptoms at all, so had almost stopped worrying about it.

Fast-forward to October, though, and I woke up with double vision. I was referred to another neurologist, and after another MRI, he diagnosed ‘mild’ MS - but advised that as I’d gone so long without a flare-up, there was no need to start DMDs yet. Well, five months later, here I am with another flare-up (tingling/pain/bizarre sensations in the leg). My neurologist has told me that unfortunately, this means I do need to start DMDs after all - and I guess that means I can’t continue to pretend this isn’t happening, either.

So, my question to all of you is… who did you tell about your diagnosis, and how did you tell them? Back in October, my neurologist advised me to keep it on a ‘need to know basis’, and so far, my (extremely supportive) boyfriend is the only one who has needed to know. I hoped it might stay that way if I again went a long time without another flare-up. But now that I need to start treatment, I feel like it’ll be harder to hide it from my family (or my employer).

The thing is, I’ve kept my parents in the dark because I didn’t want them to worry. I’ve kept my employer in the dark because I work in a senior position at a media company, where long hours are par for the course and I feel that people will question my ability to do my job if they know. I’ve kept my friends in the dark because I just don’t know what to tell them. My boyfriend was with me in the neurologist’s office when I was diagnosed, so it wasn’t me who had to break it to him, and it was still hard to put him through it. I just don’t know how to do that to everyone else.

I’d love to hear your stories about how you handled telling those around you - and if there’s anything you wish you’d done differently. Thank you.

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Hi Butterfly, no easy way I’m afraid. Parents had me in a wheelchair (in their heads) in months, a nursing home & needing full time care, didn’t happen fortunately, but they will still obviously have their concerns. I did give them plenty of leaflets from the MS society which explains in detail what they/you can expect. Trouble is, like you say, if things do progress, it’s going to be more differcult to hide. My close relatives, friends were at least aware of the problems & I think them being informed prepared them. To find out later on will be more of a shock, so to speak, than telling now the diagnosis is relatively new. My parents needed to feel involved. I do think you need as much support as you can get, there is also the question of your employer, you don’t need to tell them, but I do think, if you need time off due to the MS, hospital appointments etc, they can understand why you are unable to attend work. It will be much harder to make excuses if they don’t know. Once you start DMD, things should hopefully settle. There is no reason you cannot carry on with your job, but you don’t need stress trying to keep up a pretence of nothing wrong, MS loves stress, it gets far worse when you have pressure, hopefully it will stay stable for the considerable future, but at least, if out in the open, people can understand. Remember, MS shouldn’t need to control your life,it can make it hard but everyone does need to be prepared for the times it rears it’s ugly head. You need their support for your wellbeing as well, don’t try & do things on your own. Good luck, they will understand, promise Tracey x

1 Like
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hi butterfly

i was diagnosed with rrms the week before my 50th in 2008.

i knew something was seriously wrong for 12 months so it was a relief.

my husband was with me at the appointment with my neuro.

it was important to me to be able to explain it to my dad, sisters and my sons who where aged 19 and 20.

the leaflet RRMS from this site explains it very well, with diagrams of how the myelin is stripped from our nerves.

my eldest son had just qualified as an electrician and he really understood it quickly.

“so that’s why you keep falling and dropping things”.

youngest son took it in his stride but each time i brought a new piece of equipment into the house he’d go quiet and i needed to reassure him.

youngest sister was calm as she always is.

middle sister was slightly dramatic as she always is.

dad was my main worry because he remembered my aunt before she had ms and worried that it would be as bad for me.

my aunt had ms in the 1960’s and there was no treatment, so i needed to explain that things were much better these days.

my closest friends had known from the start that something was wrong and they have been fantastic.

i had been off work on the sick for 12 months and occupational health were very grateful to see my neuro’s letter of diagnosis. i was offered early retirement on the grounds of ill - health which i accepted.

we know a lot of people socially and some of them caused me stress so i kind of dumped them as gently as i could.

i’d encourage anybody with ms to ditch as much stress as possible.

my friends and family are my anchor.

i hope that the people you tell are as supportive as mine.

carole x

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As others have said, there is no easy way. One thing I found particularly hard was that, for at least a year, I could barely convey the information without a fit of howling tears… Sometimes things are easier that you would think - one close relative, for instance, was initially relieved at the MS news because she had been in private torment, convinced that I had a brain tumour. Like you, my OH knew as soon as I did. I told my boss and close colleagues straight away - I was walking like a drunk person and typing like a beginner in mittens, so it wasn’t hard to spot that there was a problem. Close friends and neighbours likewise.

I didn’t ask anyone to spread the word, but did not ask people to keep it to themselves either, assuming that the information would seep out more widely over time without me going to the stressful faff of having to tell people. In fact, people tend to be remarkably respectful of one’s privacy and disinclined to blab! To this day, I am surprised to find distant acquaintances of long-standing who don’t know I have MS (or at least are polite enough to pretend they don’t!)

There are no right answers here. Your own judgement will always be your best guide.

Alison

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Hello

I’m 37. Diagnosed last year after nothing worse than some numb toes (all better now). Would describe myself as fit and healthy (both mind and body). Received round 1 lemtrada in August 2016.

Like you the only person that initially knew my diagnosis was my boyfriend, who was with me in the neuros office when the bomb was dropped. And like you I was initially counselled to keep it on a “need to know basis” - which at first I did. However, I found the diagnosis, assessment of treatment options and lifestyle choices hugely overwhelming - and that I was spending all night every night downloading to my boyfriend my latest thoughts and research. He was completely brilliant - but it cant have been much fun for him to have to manage me on his own.

I started to tell friends - partly to give me someone other than poor Richard to talk to, and partly because not telling my closest girlfriends felt like I was allowing my MS to alter my naturally close and open relationship with them in a way it didn’t have the right to.

I told my brother for similar reasons - and because I wanted him to be aware this was in the family - both to look out for signs in himself and in my nephews (and to get the wee men on Vit D supplements). He and his family were great. I then told my cousins (there are a lot - with a good number of younger women between 15 and 23 a couple of whom have suspected neuro issues / CFS). Again, all brilliant.

Work was a harder one. I’m head of legal for Corporate/M&A at at FTSE 100 financial institution - im paid for my cognitive abilities and my role requires long hours and business travel at times. I decided I wanted to let my boss know. He’s a good guy and I trust him - and I wanted to make sure that if things suddenly got a lot worse I was protected by the Equality Act etc. We agreed to tell my ultimate boss. Again, they were brilliant - compassionate without mollycoddling and have been good at letting me know they see me, my performance and career path no differently. So far so good - but this needs time to test it… When it was confirmed that I could receive lem I decided to tell the team that report into me. I knew I would need to take at least three weeks off of work (depending on how treatment went (easy peasy BTW - felt well enough for work within a couple of days post treatment but took two weeks off to allow my immune system to recover before getting back into the london commute)). They too were supportive (and brought me a netflix subscription and colouring books for hospital).

Whilst Im not fully “out” - I am now more open about it. I don’t shout about it, but if people ask me why I wear a medical bracelet (lem has some punchy side effects I’d prefer ambulance crew to be aware off if im in a smash) or don’t eat gluten (something Im experimenting with) I tend to tell them now. I’m naturally an open book and so avoiding questions or giving cover up answers makes me uncomfortable - not so much for the lie but for the fact that it is allowing my MS to control my behaviour in a way I am not prepared for.

I also think there is a lot of fear and misunderstanding about our disease - and that makes teh diagnosis process so much more terrifying. I wish I had greater visibility of people with MS who are just cracking on with their lives uninterrupted when I was diagnosed - so I’m trying to push myself to find a bit more courage to be properly out and loud and proud and role modelling and increasing awareness. Maybe post round 2…

Hope some of that makes sense. Apologies for the raft of spelling mistakes andt ypos - written on the fly and no time to re-read as running late for Bodypump!

K xxx

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ah kate, i have long suspected you of being one of the x-men.

…“running late for body pump”!

my suspicions are confirmed.

keep up the good work.

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Ha! Not feeling so super this morning - stronger coffee needed (!) but that made me chuckle. Dreams of being Jean Grey but sadly probably closer to the Beast (at least until I’ve woken up sufficiently to brush my hair!) xx