On Paper

Hi all,

Although I have been told many times over the past few months that I may have MS, I was still shocked when I received a letter diagnosing me as having relapsing remitting MS.

There is something about it being on paper that makes it very real. My Husband’s family were around, and i just opened the letter, read and felt like I’ve been smacked in the face.

I am in two minds as if to share the confirmation with family, friends or anybody yet. I feel like everyone will be looking at me harder, looking for something wrong. Treat me differently.

Has anyone else had conflicting feelings about telling people?

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Hi there. I didn’t tell my parents ( now both RIP). My Dad’s sister had MS and had been affected badly ( in the days before Disease Modifying Treatments) so I didn’t want to worry them. I told work and friends and from what I can remember (it was 18 years ago) people were initially a little shocked and uncertain about what to say , do or how to treat me but adjusted back to ‘normal’ relatively quickly. Probably helped by the fact that for years I didn’t really have any noticeable symptoms.

Learning as much as you can about MS before telling people is probably a good idea - some will ask questions.

Also, be prepared for different reactions. People react in different ways! One of my friends sort of said ‘ OK, so what’. He later apologised and said he didn’t know what to say and reacted badly.

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It takes time to come to term with an MS diagnosis - just see what each day brings for YOU 1st possibly.

Reach out if you need as im newly diagnosed with PPMS - youre not alone lovely x

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Hi April 2023
I totally relate to your situation, I was diagnosed in April 22 with MS which came as a shock!!
I did tell my husband but nobody else for months, I felt like a failure if I’m honest (why ……I have no idea but it’s definitely what I was thinking at that time). So we soldiered on trying to pretend all was well and I had just hurt my leg… which was the main issue for me.
In Sept the same year I had a diagnosis of PPMS and my MS nurses said I really should tell my family. So in December we spoke to our children (both adults, which I think made it easier for me to talk about things). My daughter was heartbroken and my son wanted to run away from it all.
Once they knew I felt a weight had been lifted and it became a little easier telling everyone, but as others have said…. You may get the strangest of reactions I’m afraid.
Cut to the current day and I can now talk about my MS but I’m still very angry with the way our lives have been turned upside down on occasions.
My hubby always says ‘we can still live our lives, it just takes a little more planning and is slower’ bless him.

I think we all handle things in our own way and when you feel ready you will discuss things I’m sure. I never told my Mum before she passed away as she didn’t need the worry, but this forum and the people on it have been a great source of support, advice and inspiration.
I wish you the very best, remember we’re all here to help wherever we’re able.

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Hi @April2023
I remember my initial diagnosis of multiple sclerosis letter 24 years ago, it stated "probable multiple sclerosis, so apart from immediate family knowing I just kept it “hush hush”, until it accounted for absences from full-time education and later full-time employment.

Everybody’s different so if you feel comfortable about disclosing it, then you can, but I tended not to unless asked tbh.

I know the news will take some time to sink in, but definitely carry on living your life, you do get used to having the disease and you do learn to adapt your life accordingly.
Best,
JP

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Most certainly had conflicting feelings about who & what to tell. You are already coping with the news and what it means for you, so my comment to you is pick and choose when you are going to share the info. Make sure you are comfortable with the info and the possible consequences of sharing or not sharing. It can be a bit of a mine field but if you start with your closest and most trusted family or friends. See how it goes and learn from each interaction. Wishing you all the best
Mick

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Thank you guys. I haven’t said anything to anyone other than my husband yet. I feel like I need to speak to a MS Nurse and process a bit more, as I am up and down at the moment.
I was annoyed because I think my husband has told his Mum and Dad which at the time felt like he was sharing news that isn’t his to share. Now I’m seeing it as him reaching out as it’s also a massive thing for him.
Everything is just circling at the moment. So, I am going to ride out the emotions and decide when is the right time for me.

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I am sorry about your dx. One always hopes against hope that ‘maybe’ will not become ‘definitely’ and it’s not nice when it does.

On who to tell, well, that’s down to you and what you want, but even that can be complicated, I know. I think it is quite a common experience in those early days to spend more time and emotional energy managing other people’s reactions, hopes and fears than our own! Which in a way can be quite a useful displacement activity, I suppose, at a time when our own thoughts are not always ones we want to spend a lot of time with. People’s reactions can be hard to predict and are not always terribly helpful. On the other hand, the love and support of the people who care for you most is a blessing, even if hurts to see them suffer on your behalf when told news that distresses them. Just go with the flow. There are no rights and wrongs.

I think it’s wise of you to allow yourself to come to terms with the diagnosis and let your mind come to rest.

(My wife told my sisters when she ‘wasn’t supposed to’. As you say though, it’s a lot for partners to deal with and I’m enormously grateful that she has quietly accepted that her life won’t be as she perhaps once expected)