Last reply 6 years ago
New and adjusting…to tell, or not to tell…

So… had my diagnosis confirmed today. I knew at the start of my symptoms what the result would be (my mother was diagnosed over 15 years ago).
Even though in my head I knew, having it confirmed has knocked me a bit, I was given all these leaflets and information packs on treatment options and I just cant bring myself to look at them yet…I guess this is where the adjusting comes in…
My main problem is apart from 2 friends (one happens to be a physio) and 2 collegues (covering for me in work to attend hospital) I havent told anyone.
Do I need to? Where do I start? Its the family I know I should tell but cant bring myself to do it…My mother, with her MS has enough to deal with, without having to worry about me, and my younger sister, I dont want her getting upset after seeing how its affected our mum etc…if I’m happy keeping it to myself isn’t that OK?

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6 years ago

I believe there are laws in place saying that you can’t get sacked for having MS 🙂

What work do you do?

6 years ago

MS, much like life, is very much a personal journey, no two peoples experiences are the same, but there are common factors to be found 🙂

You don’t need/have to tell anyone you don’t want to, including your employer, unless you’re like a pilot or surgeon or something. For me, I kind of just blurted it all out, my symptoms were quite clear that something was wrong for all to see and I guess I just didn’t take my diagnosis serious. I was (still am) young, naive (again, still am) and I definitly didn’t take it seriously (probably still don’t take it seriously enough).

Telling my parents was slightly different, but again, I couldn’t keep it secret from them. I was living 300 miles away from them, so they had no clue anything was wrong, and I’d known for over a year that it may be MS, so I felt like I’d been lieing to them by not telling them. They were divorced, so I had to travel down and have the same conversation with each of them, seperatly, but I had my long term girlfriend with me which helped them. The reactions I got from them was completely diametrically opposed, but not unexpected. My dad was one of disbelief, shock, but no outward showing of emotion, my mum broke down in tears, again in disbelief, but she was comforted with the fact I had Deb with me 🙂

You shouldn’t feel nad not telling them, if they love you, they will understand. You’ve only just had the news yourself, give yourself time to adjust. Even if you were expecting the news, it doesn’t make it any easier, just look after yourself, it will get eaiser, I can promise you that 🙂

If you need to talk, you’re welcome to message me.

6 years ago

Sorry to hear about your diagnosis. Even if you were expecting it, it must have hit you hard to have your fears confirmed out loud. From my own experience I know how awful it is to face telling anyone. When I was first diagnosed I didn’t want anyone to know, but I now realise I was in serious denial, as I think most people are at first. You’re sure to find that after a while you won’t mind who knows, it’s just hard at first because telling people makes the whole thing real and you are probably not ready to admit that it IS real. You need time to get your head around it all, but I would suggest that you should at least tell your family, they wouldn’t want you to deal with this alone. Good luck.

6 years ago

I have had my diagnosis with me for jus over a month now and I can understand the worry of do I or dont I? You will do what you think and feel is best. There is no wring or right. I told every bugger I know and yes i have had stunned silence, tears and ” oh i know someone with that they are fine.” my motto is life is what it is and some of us are sewerage workers dealing with the shit that comes our way. All the best with everything. The one important thing i can say to you reading what you have told us is dont be alone, talk to someone (anyone). A problem shared is a problem halved apparently.

6 years ago

MS was just another part of my life. I was ignorant about what might happen in my life, and just took it as a fact of what may happen in the future. Am like Mr Spock in that logic plays a huge part in my life, and to me it served no logic to worry about what might be.

Used that same logic when deciding to go on disease modifying drugs or not – would it improve my life or not. I decided not and wanted to find something that improved my life rather than just possibly stop me getting worse.

I had a lot of good luck in working out that pulses (beans, peas and lentils) were responsible for a lot of the worsening of my health – I actually thought I’d found a cure for MS! Research (asking other MSers) showed that it was only me

6 years ago

Hello Evan,
There is know right or wrong way to answer your post.
Some very good answers have been given to you. When the right time comes you will know. Dont rush things and learn to get your head around this yourself. On the Other MS site there is a number you can call if you need more answers and help.
Good luck!!

6 years ago

I can understand all the comments.. I had my diagnosis in Dec, and kinda buried my head in the sand and was quite matter of fact with the people I did tell.. including my family.. I felt that I had to put on a strong front .. because if I wasnt worried.. they wouldnt be….Having a couple of weeks of work at the mo… and thinking about the new job (area) I am about to commence.. and if I should tell people.. my beautiful friend is doing a cycle ride for MS, and I was thinking, one of the best ways to get funding would be to put something on facebook re .. click here and donate… I know she would get so much more sponsorship if I told all my facebookers I had MS and tell them to donate.. seems like a kinda blunt way of telling friends (live in south of England and from highlands of Scotland.. difficult to get to people) but the other part of me thinks.. I should be able to tell people.. and once its done .. great.. and no face to face… omg god you must be devastated .. comments… lol.. Your right though Jane.. I am still getting my head around it.. time will tell I guess.. I like the reference to the stages of grief.. still in midst of process..
Good Luck!
Christine x

6 years ago

I am just waiting for the official confirmation from the consultant. My appointment in next Friday. I have told everybody around me. I could not keep it a secret as my symptoms are too obvious. I have received a very warm response from my work colleagues, but I believe this is due to them all being social workers or care co ordinators. My family were obviously shocked and saddened. Even to the point, that my boys stayed away from me for about a week as they were simply frightened. But with encouragement they have now taken it all on board and have witnessed me at my worst and close to being ‘normal’. Humour and love has carried me through the roughest part and I know I have more scenarios to come.
Take care

6 years ago

Just to add… in the past week since finding this site things have become better for me.. it’s just great to know you are not alone.. and when and if you ever need someone there are lots of people there for you.. that genuinely know and understand you.. Is everyone feeling the love lol
🙂 x

6 years ago

Feelinng the love ?
You have been listening to florence and the machine to much!!!!!!
Jane x

6 years ago

Didn’t realise it was possible to have too much florence?

6 years ago

She is amazing lol 🙂

6 years ago

Hey guys. Thank you all so much for your replies. I guess I’m still taking it all in (still doesnt feel real).
Im think I’m going to allow myself a few weeks to let it sink in, get used to the fact that this is now going to be a way of life, and then start the process of telling people.
Like you’ve said everyone is different in how they deal with it, but reading all your responses its nice to know people who understand and are experiencing the same thing, show such support (thank you)

Also, the fundraising idea/announcing a diagnosis might be a good idea..I signed up in January for the Great North Run – funny old world right? haha!

Onwards and upwards hey!

Plus…Massive Florence fan right here 🙂


6 years ago

Not an other florence fan!!
As i say “EAR TORTURE”
Theres been a band gigging in Liverpool tonight called “New Hips” they are on utube. They are even worse!!!

6 years ago

I went to some of the discussions at MSLife regarding work and one speaker emphasised that you may feel that you are making a big announcement akin to a declaration of war but chances are that the audience is thinking about what to have for tea or what film to see over the weekend and they won’t be thinking that it’s such a big deal.
I don’t think you need to tell people with a big show and dance (unless that’s your usual way of talking with people).

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