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Telling friends / co-workers you have MS

Hi everyone. Sorry I’ve been posting alot recently but have a million and one questions to ask lol.

My partner has been diagnosed with RRMS. While we were waiting for his diagnosis he had a relapse which was making him sick on and off for 2 weeks. He fixes tractors for a job and this was happening during harvest so their busiest time. We were aware he was looking at a MS diagnosis so I advised my partner to speak to his boss at work as it looked really bad him being off for a few days, then back for a day then off again. His boss has been extremely supportive of my OH and between the two of them they decided to keep his diagnosis quiet as they don’t want him to be treated any different.

Heres where the problem comes in. My OH has a co-worker who is a really good friend of ours, and, he is dating one of my best friends. So I have spoken to my 2 best friends about what’s going on with OH and shared with them my fears, as I need support too. Now my friend is harping on at me about when OH is going to tell her boyfriend/ his friend. I’ve spoken to him and he doesn’t want it common knowledge. I’ve explained this to my friend but she is saying that they are taking the mickey out of OH for having time off work and she thinks he’s being selfish not telling him the reason he keeps having time off.

Now I’m really angry at my friend for saying this to me. I said its HIM with the condition and therefore it’s up to HIM when he shares it, if he decides to at all. Why can’t she see I spoke to her in confidence for support and I feel she only wants him to know so she can talk to him about it. Also, how awful that they are taking the mick as they don’t have a clue what he could be going through.

So so what do you think I should do? Did you share with your friends and colleagues?? I feel I can’t talk to my friend about it now as she has made me really angry about the whole thing.

Dora

Personally I have no problem telling people,and Pretty much everyone that knows me is aware of my condition.

When we have met people on holiday I told them as well as to me it was easier to be upfront about it then explain if I dropped food or something.

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It’s not about being selfish, and you’re right, it’s HIS condition and HIS choice who to tell or not. However, personally speaking, I can never understand why people don’t want to tell others, (friends/colleagues). This “keeping it secret” is what has caused the stigma attached to Epilepsy and mental health issues, and there really should not be any.

It isn’t contagious, something to be ashamed of, terminal…so why he wouldn’t want to share it with the people he works with I don’t understand. What I can understand though is, the shock of diagnosis. The fear and uncertainty of what changes may lie ahead of him, in his work life as well as his personal life. Perhaps when he gets to grips with it in his own mind, he may realise it is better to enlighten people. People can be very understanding and he may just need that understanding one day. Good luck. :slight_smile:

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I have only told family and a few close friends. One of my best friends she can’t keep anything to herself and puts everything on facebook so I have not yet told her. I was diagnosed possible MS in March 2013, then definite MS in Nov 2013. I’m sure I will tell her eventually.

I went away on a course last year and told the organisers I had MS as I thought I should. At the dinner table one of the organisers started telling people I have MS, I was surprised by this as I think my health is confidential. Also another lady (the cook) said to me in front of other people at the dinner table “how does gluten affect your ME?” I responded gluten gives me IBS symptoms, I didn’t correct her that I have MS not ME. Again my health condition is confidential.

I know I haven’t answered your question.

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Oh boy. To the Organiser, my acidic response would have been along the lines of…“I have no wish for my health to be a topic for general dinner table conversation thank you!” Now, moveing on from that, “how’s your sex life?”…all done with the sweetest of smile of course.

To the cook…“The lady informed everyone it was MS I have, and again, I am not open for public discussion! Thank you”. How do you find Weight Watchers?

I sure as hell wouldn’t have been informing of my IBS symptoms and answering her (ill-mannered) question.

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Lenny, I completely relate to what you’ve said I can’t believe you didn’t lump them one. I know that wouldn’t of changed anything but how bloody rude!!! I like Poppy’s approach lol

Thanks you for your responses once again. I’m the same as most of your really. I’m an open book. I talk openly about my anxiety and depression issues as I feel my experience could potentially help someone else. I’ve also suffered a miscarriage in the past and again, I’m very open with people about that. I mean, I don’t randomly blurt it out but if something like that comes up in conversation I share my experience.

I think my OH is one of those people where he thinks if he doesn’t talk about it then it’s not really there. I wish I could help him accept things so he can talk about it. For example, when I miscarried our baby 4 and a half years ago, he never told his parents what we were going through. To this day they don’t know about it. I guess he buries his head in the sand over things he finds difficult.

At the end of the day, it is HIS illness and the last thing I want to do is pressure him in to opening up to people when he’s not ready to. I just hate the thought of people mocking him. He isn’t aware it’s going on but I think I should tell him so his boss can nip it in the bud? I don’t know what to do. I just want him to be happy but my apparent best friend is making this stressful? He doesn’t know what she’s said. I’m not sure if I should tell him or not.

Sorry for the long posts. Just glad to find people who I can actually talk to about all this as OH is pretending it’s not happening lol xxx

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for me, i feel that people need to be told if they make you feel better about the situation. nothing more complex than that.

i had told a few friends around the time of my diagnosis as i was already quite agitated and concerned as to what i might be suffering before the confirmation arrived. and so when it was found to be MS and they asked if i had received any news, i told them.

my missus knows of course, but nobody else in my family does. they do not need to know. my illness is not visible to them and frankly, it will not enhance their lives to find out. they have already suffered enough from knowing it is what my mum had.

my missus of course found the diagnosis upsetting and she in turn told her family and colleagues at work. she never asked if that was an okay thing to do and i am not bothered anyway. it is what she needed to be able to cope and come to terms with this reality.

people can and will be dick heads. they might harbour all sort of ill-conceived prejudices and can gossip and natter until their jaws fall off. the amount i care could not be any less.

life can be taxing enough already without second guessing the attitudes of others and so i work from the policy of ‘need to know only’.

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All in good time Dora. Just time. Consider yourself lucky you’re a sharer. I do. x

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Paolo, thank you so much for taking time to respond. I can see exactly where your coming from and I think this is exactly how my OH feels. And I think I’m like your missus, a big mouth needing to share for support. So I guess your right, I do talk to find comfort sometimes. My OH is aware a few close friends of mine know. He also knows my old boss knows as before his diagnosis I was suffering with sever anxiety which caused me to suffer panic attacks at work.

I guess I should try and ignore my friend and the pressure she is putting on him to tell her boyfriend. Ultimately it’s down to him who he talks to and she needs to accept that as much as I do guess. Thank you again xxx

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I told no-one at all of my Multiple Sclerosis for more years than I can count. Then it progressed, so I told just a few friends and one at work. Well, the news travelled faster then juicy gossip, soon leaving me wishing I’d kept quiet. It’s not that people are rude or gossipy about it, they’re not, but they are very poorly informed on MS. I soon became sick of explaining the condition and was seriously thinking of carrying leaflets, however, that might be considered the hallmark of the hypochondriac, so I refrained.

My advice is to think long and hard before talking. Once you’ve ‘come-out’, there’s no going back in!

Ben

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It is another tricky one . For a long time I did not tell work colleagues as I felt embarrassed about being different. After a while I grew up a bit and decided to start telling colleagues one of whom said “now I know why you are such a clumsy bu**er” This broke the ice nicely. Quite a relief but as stated previously you can not un-tell. It should be up to your OH when he feels comfortable. All the best

Mick

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I can see why you feel very uncomfortable about this for complicated reasons. I am sorry that I have no idea what you should do now. The only thing I would say is, don’t beat yourself up too much about having let someone else’s cat out of the bag. There isn’t an ideal way for news about someone’s MS to get out there, and it is rare for the person who has the MS to stay in total control of the information flows for long: life normally intervenes in some way or another to make it necessary to share before one might ideally choose to. So what has happened is unfortunate, but the news would most likely have leaked out before your partner wanted it to, one way or another. And if the word gets around at work (and I think you must assume that it very soon will do), that might even turn out to be a helpful thing - who knows?

Alison

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I am a sharer as well, but I really think people have the right to keep information private if they feel more comfortable like that. My advice on the friend who thinks that your OH should tell people about work is that you should forgive her for trying to get involved in something that is not her concern. She’s probably doing it from good motives, but it just isn’t her business. From my experience, if you are clear in your head that a) she’s done something she shouldn’t have done; b) you’re going to forgive her for her mistake and not hold it against her, then you will have an easier time - you won’t have to waste time and emotional energy being angry with her. If she says anything about it, just be clear with her that it is your OH’s decision who he tells and when - he’s an adult with a horrible disease and he has to be free to deal with it in the way that suits him.

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Me? I’m an open book. My first symptom wasn’t one I could hide, and everyone at work knew I was off sick. It was 4 weeks in total, and I kept them up to date with the referrals, tests and so-on. They knew the diagnosis the day after I got it.

Everyone is different and, some people are very private. Don’t want to be a topic of discussion… I can understand why.

To your friend, who is badgering you to get him to tell her boyfriend, I would be tempted to tell her where to go! If she brings up the mickey-taking behind his back again, I would say to her ‘you must be so embarrassed by his behaviour. Sounds like they work in a school playground, making fun of each other behind one-anothers backs! I can see why my bf doesn’t want to say anything. That’ll be the next topic for gossiping about…’. It might make her sit back and think about things… But that’s the way I am. Outward going, and say it as it is!

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that’s a tricky one bella- i am tempted by poppy’s suggestion as that shifts the awkwardness onto your nosey friend. you are respecting your partner, so why can’t she?

i have often resorted to a tit-for-tat approach when dealing with nosey gp receptionists or cover-managers at work who want a blow-by-blow account of why i need an appointment/ why i can’t come into work. this often includes candid descriptions of bowel movements (explosive or otherwise) and projectile vomiting. i add updates on my nasal emissions (totally fictitious) just to fulfil the entire gamut of bodily functions.

bottom line- its not your news to tell and she should respect that.

take care, and stay strong, fluffyollie xx

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Thank you everyone. I love this community you have here and really hope my OH will join when HE is ready.

I think I’m just gonna it with my friend for now and if she does bring it up again use the things you’ve told me. I just can’t understand how she cant accept its down to him when he chooses to talk to people. I think if he deteriorates then he will most probably tell everyone he works with. But for now, he’s as fit as a fiddle and you wouldn’t know there’s anything wrong with him. It’s only needing time off for neuro and now ms nurse to discuss treatment.

Thanks for your kind words and support.

Bella

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I don’t think there is a “right” answer to this and will depend on individual circumstances.

when my MS was confirmed, I just told a select few family and friends (including my direct boss who was based overseas) and asked them to keep it to themselves, which thankfully they did.

My early relapses, apart from a slight limp, weren’t very visible to others. Thankfully I have an office job which is not physically demanding, so my work was not affected. If people asked about my limp, I said it was a flare up of an old football injury.

As the relapses became more frequent and the effect more noticeable, I decided to let more people know. I called everyone at work into the board room and told everyone. Nobody really batted an eyelid.

doing things this way was definitely right for me although I recognise this may not be the right approach for others.

derek

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If your partner doesn’t want it to be common knowledge that he has m.s. why on earth are you discussing his m.s. with your friends and why pressure him to tell his boss?

My guess is that as the partner of someone with m.s. you understandably want reassurance/support - not sure if you’re going about it the right way,

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While I can see what your saying, you clearly haven’t read my previous post.

I did not PRESSURE my OH in to telling his boss, I suggested it might be an idea as he was off a lot and they knew he was attending the hospital to try and find out what what wrong with him. He was told by his GP he was probably looking at an MS diagnosis and when he had another attack before the official diagnosis I suggested he speak to him. My OH agreed with me and therefore did it. At no point did I pressure him.

As for me talking to my friends. My OH was aware I was going to talk to them about it before I did. I spoke to him and he agreed it was best for ME to talk. Obviously being in a long term relationship he is aware of my own issues and bottling things up doesn’t work for me. I am there supporting and encouraging the person I love who is absolutely terrified. I have to try and force my tears back for him at his hospital appts. His mother is extremely upset with the whole diagnosis and he always wants me to feed back the appt information to her as he can’t bare to hear her cry and gets upset himself. So I have to be strong and positive!

I realise now that speaking with that particular friend may have not been my cleverest move, however this is a friend I’ve had for 16years. I never thought it would turn out this way. Hindsight is a wonderful thing…

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Hi Bella,

Thought I’d posted yesterday, isn’t here.

I only told partner and brother when I was diagnosed in '98 and asked them to keep it quiet.

10 years later when my walking started to be affected and people started to notice, I sent an email to all my friends explaining everything.

No gossip or Chinese whispers as everyone knew everything at the same time.

Good luck.

Jen