Partner diagnosed with MS -he hasn't told anyone else yet apart from me

Hello I’m new on here and feeling quite overwhemed as i am trying to get my partner to open up more about his diagnosis.He had tests a while ago during the pandemic and they found lesions but has only got a formal diagnosis about two months ago .He is not good at talking about it, but has recently met his MS nurse and been offered medication for his RRMS.He seems ok and has started talking a bit about it to me which he wasn’t doing before. He has bouts of tiredness, some minor issues only at the moment . He has not told our two adult daughters -1 is at university and 1 is travelling away from home , or our families. I really want him to do this, because i am struggling with this knowledge and am really feeling alone.I have told two very close friends because i needed to speak to them to get some advice .My partner has mentioned a group we can go to to discuss his MS which I hope we can attend in the next few weeks. I am so worried that my daughters are going to find out by accident so can’t tell anyone else.When I ask him to tell them he says he needs to know more and it is not the right time.I feel that he needs to tell them himself but I am concerned he is just avoiding the reality of the situation.I don’t feel I should be the one to tell my daughters and it needs to come from him. Any advice??

Hello @Allthebest56
Before when my MS was quiescent, albeit with occasional relapses (RRMS), I didn’t feel the need to openly discuss my multiple sclerosis; just felt a bit awkward mentioning it in conversation, felt a bit weird.
Now my MS is more apparent, me using two walking aids to get about, if questioned I’m perfectly happy to tell of all my ailments along with the multiple sclerosis tbh.
I think just give it time: there’s really no rush to broadcast your disability imho.
Best regards,

You don’t need to worry about the daughters finding out from anyone than him as long as your have chosen your two confidential friends carefully. The trouble is that most people are pretty terrible at keeping their mouths shut, as perhaps you already suspect. However. Of course he has to tell your girls, and it will be awful news and of course he dreads doing it, but the cold hard fact is that there will never be a good time and I’m sure he knows that perfectly well. One of the troubles with MS is the feeling out of control. Managing information carefully and competently is one of the small ways in which we can regain some sense of agency, and a plan for who to tell and when can be a helpful part of that. No parent wants to give that sort of news to a child, even an adult one. I don’t know about your husband, but for ages I could not mention my MS without becoming a snotty, teary mess. Maybe that’s something that he fears too. Of course fathers want to protect their daughters from all harm - that’s what they’re for and that’s why we love them so much. But he can’t protect his girls from this, and that’s desperately tough. I really feel for you both here.

Hello. Sorry to hear about your partner’s diagnosis. It was sometime after my diagnosis before I was ready to tell anyone. My then partner , now wife, was with me when diagnosed and then a few weeks later I told work and friends. However, it was years before I told my sisters and parents. I think I was trying to protect them, and also trying to come to terms with the diagnosis and what it might mean for me.

Every case is different but it was years before I developed any noticeable symptoms. So, perhaps give you partner a bit more time and, with him, learn as much as possible about MS.

Hi Allthebest56
I’m so sorry to read the obvious anxiety and worry in your post but I have to say that I agree with all the responses you’ve had from my fellow MS’ers. It’s such a difficult thing to absorb let alone accept as a diagnosis, and I can relate to your situation exactly as my hubby thought we should tell our family immediately too.

Once all the tests that are necessary to get the diagnosis are done, (speaking personally), it was a bit like being numb and yes… if I don’t talk about it it might not be correct, even though I knew it was correct! I’ve read elsewhere that some people feel relief in actually getting a name for the awfulness of MS, i didn’t, I just buried my head for months.

My son was living away then, but my daughter was living not far away yet I just couldn’t tell them, some part of me felt I’d let everyone down and I was a failure because I’d now been given a life changing diagnosis.

In the end. of course and with tons of encouragement from my MS Nurses who recommend some counselling, i realised I had to be honest instead of brushing comments off saying I’d had a fall in 2020 and it had affected my leg (which is true and actually what started me on the path of tests etc).

Eventually I had my MS diagnosis in April 22, then the PPMS diagnosis in September 22 and told my kids in November 22, it took me that length of time just to admit I had MS, I’ve still not accepted things now I’d say, although our lives have definitely been turned upside down :joy:

My husband (amazing man that he is), says we can absolutely live our best life, it just needs more planning and will be a lot slower bless him!!

Im sure you’ll support your partner as he tries to take in all the diagnosis might mean, please use the MS nurses, you’ll get so much support on this forum too and people here can relate to whatever you’re going through because sadly there will be others on the same path as you.

I wish you all the very best xx

1 Like