Last reply 6 years ago
my secrets out ..

i ve managed to keep my condition to close family only for a yr now since being diagnosed. not ready for the world to know just yet but my secrets out, feel sick and panicky…. is this normal? anyone help??

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DJDsouza
6 years ago

I didn’t care when I was diagnosed. Was like a big adventure that I was going to have to take…..It’s different things to different people, so every one will react differently to that journey – the most normal thing about MS is that everyone’s experience is different 🙂


scotkiwi
6 years ago

I didnt tell anyone for the first two years! Apart from my Mum, Dad and g/f at the time. Noone else knew whatsoever.
Two years later, after a fairly bad relapse I had my “coming out moment” and talked to ppl about my condition.
These days I am quite open about it and dont care who does/doesnt know what – it’s their issue!


loulou
6 years ago

Hello Dizzy
I know exactly how you are feeling, I feel my MS is MY health problem and not anyone elses business until I feel ready, I feel so let down by my family as much as I love them but my parents took it upon theirselves to go telling people against my wishes early on and this has really upset me so much, I know they are are so worried but people just don’t understand the stress thing with MS, I do not want to be a talking point for people that love talking about health problems, unfortunately this would be the case with my in-laws, they do not know I have had this for years.
Ive a sister that really does not care and more interested in her business and whatever partner she is with at the time! very upsetting, if the boot was on the other foot…….. I have learnt to just take a wide berth from people that may stress me out. I talk to people that I feel really care and at least try to understand and I love to help other people in any way I can that have this life changing condition. It is so comforting to talk to all you guys that really understand xxx’s to you all, have a good day


dizzy
6 years ago

thanks loulou, i do the same and stay clear of the people that stress me out, my inlaws being most of them and they dont know yet and am dreading it when they do. i know they think they are being helpful but it s the opposite and they dont get me. i have 3 kids one of which is a toddler whos hard work but love him too bits and wouldnt have it any other way. he keeps me going, i don t want anyone else to look after him i want to do it and make the most of him as i dont know whats going to happen to me, one day i might not be able to look after him and thats when i ll need the help not now! i am also scared that like you said i m gonna be the local gossip and dont want to feel i m being treat any different from the day before when they didnt know. i havent told my 10 yr old son yet and not sure how to but going to have to do it soon as i dont want him to hear it from someone else! i m not ready for the world to know!!! my husband doesnt understand why or me !!!


reddivine
6 years ago

Dizzy, why hide it? when you get to the falling-over-in-street, walking-with-stick etc bit, it helps to say to others……I have MS. Spill your drink? i have MS. SAY to folks…Can you carry this tray for me? can you take my luggage up these 3 flights of stairs? wheres the lift? or for some of us, wheres the loo?


lulu
6 years ago

Hey Dizzy im the same as you! Ive had MS for a year now and there are only 3 people in my family that know and their sworn to secrecy! None of my friends know. Everyone thinks my hospital visits are for my diabetes. I dont want anyone else knowing because people treat you differently, they might not mean to but they do! I want to be me not a girl with MS. I couldnt think of anything worse than people gossiping about me and pitying me! People can be very cruel sometimes! Im not ashamed or embarrassed about having this disease as there was nothing i could do to prevent it, i just dont want anyone to know and look at different! Good luck with everything!!

loulou- Im so sorry you didnt receive much support! Its sad hearing that, but you sound like a very strong and inspiring lady!!


bubblesgalore
6 years ago

i brazened it out. i cant keep a secret for toffee… reactions have been positive. i know i love my family, friends and work colleagues.
having said that, i love this site for off loading and reading other peoples thoughts/comments. that has helped me in areas where other people are ignorant of the condition
xx


aardvark
6 years ago

Hey @lulu @dizzy @loulou

I totally get where you’re all coming from. While @reddivine is completely right about not worrying about hiding it when you’re at the “walking with a stick” stage, if like me you’re not at that point yet, deciding when to “out” yourself (and to who) is a more complicated series of decisions.

The very last thing I want personally, is for anybody to pity me, or even worse, look at me and think “there’s nothing wrong with him he’s just attention seeking”.

So for that reason, I can count the people who I’ve told on two hands. Obviously, as soon as you’ve told anybody from outside your immediate family (and even then you can never be sure) you loose control over who knows – even if it’s your good friend telling another good friend on a “don’t say anything but…” basis. So I guess I don’t really care who knows, but I’m sure as hell not at the point where I’m going to tell them (if that makes sense!)

Being amongst this community here at shift.ms has allowed me to talk about my MS openly, with people I know are never going to judge me!

Mark


jat721
6 years ago

I hate the awkwardness of telling people “news”. So when I was diagnosed I told my close family and friends within the first two days and told them to tell whoever they want because I would rather people know and it be normal, than the awkward explanation of “You’ve had it for how long and I didn’t know? and then the 50 questions that follow that. Plus, I consider people knowing an increased awareness of MS. I want people to know about MS and the more people who know of MS, the more people who are going to donate to help find a cure.


meg
6 years ago

I tell anyone-one where it seems relevant. It’s surprising how many have a friend or relative with MS. Sometimes I mention it to embarrass some-one who has been particularly insensitive about me or some-one else -like the jobsworth who kindly let me have the key to the disabled loo when the ladies on that floor was out of order and I wasn’t sure I’d make it ‘just up one flight and along the corridor’ in time. ‘I don’t mind, but a real disabled person might’ he said!


funnybank
6 years ago

i found out that a neighbour and ex work colleague had been telling people on my behalf. she knew because i asked her if her teenage daughter could babysit for us when i was going to a hospital appointment and i was desperate to go with my partner. i think i ended up going with a friend because they couldn’t help and dom stayed with the kids. i won’t speak to the hideous gossip any more, she wasn’t telling people for my benefit. i almost fell off my chair when i told our accountant and her response was ‘oh yes i already know!’
when i was getting diagnosed a couple dom knows told him that i was just imagining it and that they had another friend who kept making doctors do tests on her because she was mentally unbalanced and obsessed with having ms
my partners family don’t know they wouldn’t be supportive and i am reluctant to tell friends as some i have told have never been in touch with me again. on the other hand i know that those that have been supportive are worth having as friends.


loulou
6 years ago

I sometimes tell random people, people that lives miles from me and quite often they say, oh my mum has that or sister or brother and this has led to a few friendships and very useful leads, in the end, the people that do know I don’t trust that they will keep it to them selves, Aardvark like you say, you lose control over who knows, I am quite a private person so this is very hard for me and I can’t stand “gossipy” people but it is getting harder as MS is such a visual thing often, I do enjoy mixing with MSers but have been to the local centre and although I met some nice people, these places can be quite scary and I havn’t been back there for months, I wish us shifters ! were all a bit closer to all meet up!

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