@louie999999

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louie999999

Coming out

Hi everyone How did you make the decision to "come out" about your MS? It's been 5 years now and only my parents know. Sometimes I prefer that no one knows and I can just get on with things and other times I feel like I just want to yell it out.

cameron

@cameron

I haven't, except to the people at work who needed to know and to my close friends. Based on what I know of others' experiences, I am glad I did this. I am also aware of my own prejudices: had I been told that someone had MS, I would forever after have thought of the MS first rather than the person. Now I've got it myself, I don't want to be defined by it. Or maybe it's just that I can't face other people's pity. As with most things in MS, it's a personal choice, so don't feel pressurised into making a decision. If and when the time is right, you'll know what to do.

Stumbler

@Stumbler

That's a tough question to answer. It depends on a few things. I suppose the first consideration is what effect has the MS had on you. By this, I mean what visible signs are there, which may require you to provide an explanation. Then there's you and your personality. Are you an open or a private person? Do you worry about what people may think of you? Then there are those that you may tell. Consider it being Pandora's box, once it's opened, there can be no reclosing it. Would you be happy with people sympathising and feeling sorry for you? So, lots of questions and no real answers. Sorry about that. I just hope it helps your deliberations.

louie999999

@louie999999

I don't have any physical issues that anyone would notice, in fact I run most days and probably look better than I have ever done. So on that level, no one would guess. However it does take its toll on me emotionally so sometimes it would be good if some others knew. But as above, I don't want the pity thing. I don't want to meet up with people only for them to tilt their head to one side, look sad and say how *are* you. I don't want people constantly asking about it. Also I'm single and feel that if its out there, my chances of meeting someone will go from little to zero. But it's so tough travelling this journey alone!!

Stumbler

@Stumbler

It sounds like there is no need at present to "go public". While the impact is minimal, just consider it to be a small part of the package which is you. Everyone has some aspect of their being, which they'd like to change, be it weight, crooked nose, whatever. They just try not to make a big thing out of it. It's no great secret. And, you can "let the cat out of the bag" at some future point, when it's more appropriate.

Cazzzzzy

@Cazzzzzy

I need to get a shirt saying "I HAVE MS" so people know I'm not drunk! I can't hide mine now as it is very noticeable... I've had this 15 - 20 years and when it started it wasn't so noticeable but I would have told people as you learn who real friends and good people are, they are the ones who see beyond MS - they're the ones that are worth it! :) xxx

melissag

@melissag

Its funny that you post this today, because I actually decided today to sort of "come out" and post a little thing on my facebook about MS. I've been thinking about doing something like this for a while to be honest, I've gone back and forth on the idea but for some reason today felt right. I was diagnosed around this time last year, and almost felt like I was hiding something. My close friends, and family know, but it wasn't really something I made public... Until now I guess! Part of the reason I wanted to do this is because I get a lot of "what is MS?", a lot of people just don't actually know. I wrote a little blurb explaining it briefly and linked to the MS society's "What is MS" page. Also, people talk to people, and it got to the point where I just didn't know who knew what anymore, and I was sick of people making assumptions about what it meant that I had MS. I know it's not really a big thing, but it felt good to be open about it. Not saying this is for everyone though! I didn't think I would ever do anything like this before, I can see why others wouldn't want to.

Aileen

@Aileen

Wow you mean people actually have a choice about keeping it to themselves? Small village west of Ireland affords no such luxuries I'm afraid, I'd say people knew before I did about my diagnosis! I can't say it ever bothered me though, I think I was relieved in one way at least I didn't have to have a conversation with people where I told them, they'd probably already heard it. I did message two of my friends who are out of the country and tell them because they still could have heard it through the grapevine which would be awful I think. I guess it's a personal choice, do whatever you feel comfortable with.

Gav

@Gav

Annoyingly for me, I don't really have an option of a 'coming out' as it were, my wheelchair or crutches kind of are a way in as it were for me. I remember back when I was diagnosed, I was 23 and didn't need any sticks or chairs, I looked healthy, 'normal' but I just wanted to put it out there, tell my close friends, my team mates why I wasn't able to play the sport I love anymore. If I got diagnosed now, would I have done stuff differently? Possibly, I may not have let the cat out of the bag so readily, but I don't regret telling people the way I did, I've nothing to be ashamed of.

JasFromTas

@JasFromTas

I think you do have to consider the implications before 'coming out' - once the cat is out of the bag, you can't put it back! But my experience is good, though I didn't really choose. I work in a hospital that specialises is progressive neuro illnesses (mostly MS and MND) and most of my friends are nurses/doctors who know a lot about neuro stuff. I had been complaining about numbness at work, when I started walking funny and then, at the nurses station (enter crowd here) was incontinent. Very classy. So getting a neuro diagnosis didn't shock anyone. Thus everyone at work knows, and given that I have an obvious limp, this at least stops me having to explain. Yes, in a way I am cranky that some people may think of MS first, Jasmin second, but really, are these people the most important people in my life? No! Also, really, a year later it is a bit of a non event. No one mentions it. I get a lift home from work each shift (and the nurses organise it themselves, then tell me who I'm going with). The roster is arranged around my health, but other then that we have all.... (Gasp)... Moved on!!!! My friends are overwhelmingly supportive - a real positive given that my family are 250km (and a 12hr boat ride) away. Always there when needed, and while I may be 'doing MS' alone, I am never truly 'alone' unless I want to be. And I can be myself, I am who I am. If I can live with it, and get on with it, then so should everyone else. :-) Jas

JasFromTas

@JasFromTas

Gee I write long posts... Sorry!... XxJ

loulou

@loulou

@jasfromtaS You are very lucky with your job, it must be very comforting being surrounded by people who "understand"! @louie999999 if you are still running with no noticeable symptoms then I would carry on being known as (you)! not you with ms with people watching and asking how you are, you may be lucky and have it so mild, it does not take over your life and mind so no-one need know! xxx

loulou

@loulou

ps my two best friends know, and I tel people I want to, random strangers often! some family know because my parents told them!, some friends I don't see don't need to know I dont want people gossipping about me! I see other people walking like I do on crutches and I just want to introduce myself and ask what is wrong with them as I feel we could be friends but it is so difficult!, does anyone else feel like that? I saw a guy today and I really wanted to say hello Im in the same boat but.....I didn't want to be too forward and the time wasn't right I just want to be friends, with everyone with MS especially PPMS! xxx I know if I had mild unnoticeable RR I'd carry on as usual! xxx

msue62

@msue62

My experience with PPMS has been similar to loulou in who and why I tell and wanting to tell strangers in the street who look like they may have MS. Having said that everyone who has posted here has a valid point to make and as we are all very different yet very much the same you may want to take a mixture of advice from here and make your own decision. Whatever you do I hope that all goes well. X

janep

@janep

I was concerned when I was diagnosed that I would end up with the dreaded 'head tilt' from friends, family and colleagues and initially that was the case while everyone came to terms with the idea but generally the people close to me just follow my lead- if I don't bring it up or act any different to normal then we all just ignore it. I guess the only real benefit I found to being very open at the beginning (bordering on the blasé!) was that when I did relapse or need to change something I didn't have to start explaining it all then. But as everyone has said, it's a very personal decision and you'll know when it feels right. x

SEF71

@SEF71

Hi all I have to say I came out to close family,friends and my employer quite quickly after diagnosis as they were all very concerned after helping me cope with different "problems" for over 3 years and wanted a diagnosis as much as I did really. Other than that I have put the odd thing on my Facebook as new mile stone has arrived eg diagnosis,starting DMD's and then if people have asked for more info I have tried to give them it. I can understand how some people can find it difficult to "come out" although I found it easy I have to say sometimes I wished I hadn't as I find it hard to deal with some friends constantly asking if I'm ok .... I am always nice in my replies although occasionally want to say "I'll tell you if I'm not " lol. Keep fighting the MonSter that is MS XX

KirstyScotland8

@KirstyScotland8

I made a facebook status... It was when it was like your name and then a : so it was like this. "Kirsty: has MS. Lol." I think that got my point across quite well.

CaptainKristoff

@CaptainKristoff

I just tell people as and when it's necessary. I make no effort to hide it, it's now a part of me so there's no point in ignoring it. If people ask why I'm no longer a designer, for example, I just say "because I got MS, it affected my colour vision and the long hours made me pretty ill", if they ask any further questions I happily answer them and if not, I just get on with my life as before. I really didn't see the need to make a big deal out of it, it is what it is, making a big issue of it and trying to keep it secret makes it seem to others like it's something not to mention and to be embarrassed/ashamed of. I've never found that I've been pitied either, I go to the gym 4 times a week and train hard and heavy making me stronger than most of my friends and I cycle as often as possible, usually between 20-40 miles dependent on time ,so I'm a lot fitter than most of my friends as well. As you said, you run a lot and probably look better than you ever have so why should anyone pity you. If you tell them in a matter of fact way and then just get on with your life as you always have then, in my experience, there won't be an issue. Also, then, should you wish to ever talk to any of your friends about it you can do. Just something to consider perhaps. Best of luck whatever you choose!

SidGilbert

@SidGilbert

I 'came out' when my diagnosis was still probable so when I was dignosed I just had to confirm it. It helps that people don't think you are a staggering drunk as I live in a small town where everybody knows everybody. Word soon gets around and honesty has definitely been the best policy. People have been very understanding. It was definitely worth it. I have no secrets and nothing to hide.

Stimpers

@Stimpers

I think its whatever will make you feel best, a lot depends on who you work with and who your friends are and you probably know better than most how they will react. I told others from day one, well, friends and workmates and family. Some people try to be over sympathetic but it's well meant and doesn't annoy me. Others might just see the MS and not the person, and that's up to them, nothing you can do about that. What ever you do, don't waste too much energy on how others are reacting, thats not something you can change! Good luck whatever you decide.

Sophia25

@Sophia25

I too am really struggling with this. I was diagnosed just over a month ago and when i have told people i instantly feel very guilty that i just laid all that information onto them... i feel bad for them! whats that about??! Anyway i have decided that there's no rush and i will deal with it as and when, i guess...

Min

@Min

I live in a small village and my 10yr old goes to school with 90 pupils. Everyone knows everyone. At first when asked "oooh have you hurt your leg?" I would just say yeah. Then I decided to "confide" in someone who talks to everyone in the playground and hey presto! it saved me the job of having to explain it to them! Cowardly or sneaky? :)

reddivine

@reddivine

Coming out? oh come on, its not a shameful thing to admit YOU HAVE A DISABILITY. If you have to live on DLA, as do many of us, well the first thing you got to do is PROVE you have MS. so as aileen says,........you have a choice??

mumma142

@mumma142

I am at that point where my diagnosis is new (under a week). I am actually a psychotherapist and clinical manager in various settings. I am struggling with the whole 'coming out' thing. I have been ear-marked for a promotion and will need to tell my employers soon but how do you even begin telling those that are not in you immediate friendship circle ...sorry if that question is covering old ground or I have missed something but regardless of what I do I am really stumped ...??

Stumbler

@Stumbler

@mumma142, have a read through this publication and see if offers any assistance:- http://www.mstrust.org.uk/downloads/talking_about_ms.pdf It is UK-based, but the majority of the points are pertinent.

mumma142

@mumma142

Thank you Stumbler ...

mumma142

@mumma142

I really like that document Stumbler - certainly gives a framework to begin. I am also happy that it has confirmed the approach I have adopted with my small children. I have twins (boy and girl) who are just 5. Also, Min I think I would be inclined to use your approach in certain scenarios ... I like to think that it is subtle as well as affective ... :))

Hayla

@Hayla

O.o Im not sure i follow. Having MS is no shame at all, its just an unfortunate circumstance/lottery but it also could be much much worse - as in having some other life threatening disease/illness/syndrome that u could have no control whatsoever over. 'Coming out' is not a real issue for me, when it was just a remote possibility I told everyone about it and that my gut was telling me that possibility wasnt as remote as the docs were making it sound. Six months later when I got the official confirmation it was just a matter of telling people 'See, I was right and indeed it is MS'. Nowadays, when i either go to a job interview or meet someone I like its one of the first things I tell them cause I rather have it out in the open and evaluate their reactions sooner rather then later. Bout the 'pity parties' bit, thats something I dont really need nor want and the people close to me know that. On another side, embracing ur MS diagnosis so to say can open up a lot of doors too (specially when u have an angry boyfriend by ur side) and getting people getting things done faster then they would should u had not said something. Like in the other day I wasnt feeling well and if it wasnt for the diagnosis (and the angry bf) I would had to probably wait for at least 3hours only to be able to book an appointment for some days/weeks later at the unemployment agency....as it was I was only there for about 5/10 minutes tops and got an appointment for the next day.

Lizzy86

@Lizzy86

hi, as I read thorough these experiences of telling your closest people(friends/ family etc) after you had did you feel sorry for them at any point? So many times I was told 'oh its hard for them too' Why? I was really struggling with these horrible symptoms, couldn't balance for two seconds, needed to find a bathroom every second minuet at the ripe old age of 17! I hate to finish on such a negative but I don't really have much contact with the school friends anymore. I hear they are still a close group though! Im 27 now, and I never really said that before! Thanks for listening! xxx

anneb

@anneb

I came out at work to a few people very quickly but that was such a long time ago that I really have no idea who knows and who doesn't (and quite a few have probably forgotten). I know some people have guessed based on the fundraising I have done. When I had problems with my hands earlier this year and couldn't write that was all I said to most people - "My hands aren't working properly" and people seemed to just accept that and not ask anything further (maybe they all know?). I think it does depend on how visible symptoms are - mine are mainly sensory so it's not obvious. I think that makes it easier to not HAVE to tell people unless you want to. I do think in some ways it is difficult for family and friends. I tend to try and get on with things whereas they don't know how badly affected you are and how you can cope and find ways around problems.

AlexL4

@AlexL4

when I was in high school (diagnosed two months before my final exams) my teachers and friends knew about my MS, because I was absent for a month. then I moved to the UK to uni and here only people who need to know, know (Disability Advisors etc.). I spoke about my MS to only one person on my course. it was accidental, she posted a link to a BBC news about MS research on Facebook, I commented and the next day I told her everything and she said to me that her dad has MS as well, but on the contrary to me, he's severely affected. overall, I have a huge problem with coming out. I would like to be able to speak about it openly, maybe get involved in one way or another, but when I have a chance to say something, I always find an excuse not to do so. it's really annoying, because I feel that without coming out people won't understand me, my mood swings, my symptoms and the fact that I can't do all the things they do

cameron

@cameron

OK, maybe a problem but so what? In the scheme of things, that's surely not nearly as important as the fact that you're getting on very successfully with life. You're dealing with MS positively by living in the moment, challenging yourself and taking charge of your future by sticking at your studies. I'd say that was something to be very proud of. I honestly think that some 'emotional scarring' is inevitable with MS, but from what you're saying here, your glass is half-full, not half-empty. Big hugs, xx Kay

cameron

@cameron

Sorry - I meant my comment for Alex, not the original post. xx

AlexL4

@AlexL4

you're right Cameron, thank you:) I'm not complaining, because I'm happy, but I've been feeling like this for two months or so, before I'd had the worst summer holidays of my life, I'd felt so depressed. even the fact that I was accepted at uni couldn't cheer me up. bearing that in mind, I know that anxiety/depression, whatever you call it, is probably one of the worst symptoms of MS for me and it can come back at any time. and now I'm realising that what I described in my previous post makes me feel extremely uncomfortable and I'm afraid that I may start to feel depressed again... and glass would be half-empty then, again. I know that my problems may be nothing compared to those of others, but I needed to share my worries with somebody who would understand xx

cameron

@cameron

Alex - you will go to your doctor about how you're feeling, won't you? I've been on antidepressants since dx and they really help me keep on track. Like you, if I start down a negative track, it spirals to the point where I can think of nothing else. The last time this happened (about two years ago) I told my GP and she upped the dose. Since then, I just don't get the thoughts in the first place. The other thing that could help you is cognitive behaviour therapy, which helps you recognise your particular stress triggers and /direct negativity. It's available via your GP and I would imagine that at a university it will be widely used by the student community. BTW, like you, I have never felt comfortable disclosing, and I've had MS for 10+ years! xxx

AlexL4

@AlexL4

I'm having an appointment with a counsellor at university tomorrow. also I'm going to call my MS Nurse, because about a week ago a few of my old symptoms re-emerged and there are some new too (although very mild) and as my neuro said he wants to know about every little thing, I must let them know. and of course I will mention these depressing thoughts. hopefully I won't end up relapsing like last year when such little things were nagging me for four months and subsided only after steroids:/ xx

KirstyScotland8

@KirstyScotland8

@Alex, University is a difficult place to have MS and I am in the same boat so if you ever need to talk feel free to message me :)

AlexL4

@AlexL4

yes, I didn't expect it to be that hard to be honest. thank you Kirsty xx

cameron

@cameron

Good! I was beginning to get worried. It sounds as though there is good support out there. Perhaps the counsellor will also be able to buddy you up with someone else with MS. Keep us in the loop, all the best. xxx Kay

Tiesie

@Tiesie

I was diagnosed 13 years ago and immediately told my family and friends. They have all been very supportive but it is so difficult to make them understand. If I can't open bottles or write unreadable or drop everything I touch they think in am exaggerating, or that I had some wine before arriving or I need to go to the gym as I am pathetically out of shape. Worst is that my best friend invited me to go on vacation with them this December. I live in South Africa and the camping on the coast in the middle of summer is not ideal for anybody with MS. I really struggle with the heat and I know I will not enjoy it there. Now everybody is angry as I am such a wet blanket. Apparently it is nice and breezy by the sea and I can swim to cool off. My word, I cannot stay afloat in a swimming pool as my legs are just to weak. And apart from the heat the humidity drives me crazy. I really don't know how to make them understand!! Speaking of humidity - I feel more fatigued and much weaker when it is humid. Like a baby elephant is sitting on my lungs. Even if it is a mild day, the humidity gets to me. Does anybody else struggle with this!! Oops, I am off the topic.... I still believe that it is best to tell your family and friends about the MS, even though making them understand is difficult. When people can see you limp they understand. But they don't understand what they can't see.

Stumbler

@Stumbler

@Tiesie , you may want to have a look at this post. It provides a means of describing our symptoms :- https://shift.ms/topic/describing-your-ms-symptoms/ :wink:

cameron

@cameron

Hi, @Tiesie, I've realised that some people are quite thick. As a friend of mine often says: 'Never overestimate the intelligence of the electorate'. Don't try too hard with these folk - they're just never going to 'get it'. But we do. xx

MSer

@MSer

Hi all ;), This is my first post on here. I didn't have any problems 'coming out' with my PPMS. I told my family and friends immediately because I had it and why lie about it? They all knew I was under neurologists, having scans etc, so they were kept up to date with the story as it unfolded. I found it harder, and still do at times, getting my head around 'living with the darn thing!' Joining my local MSSociety group and meeting other people with MS has helped me loads.

Tiesie

@Tiesie

I wonder why I did not join a group like this ages ago. I never knew there would be so many people that goes through the same things I do. @Stumbler, thanks for the post. I am definitely going to put it on Facebook. My sister just read it and her eyes grew wider and wider! I will definitely visit this site on a daily basis!! Thanks for the support!

Graham100

@Graham100

Hi, I was a salsa dance teacher and a low h/cap golfer, so when I could no longer teach salsa, but still had to be there to help set up and run club, plus when I could no longer walk the course, but got a buggy and still try to play, I just simply told people why, there is no shame in being ill, people understand, some are insensitive but you can ignore them, just tell them. G.

fourteen10

@fourteen10

I had no problem in that I wanted people to know but I didn't tell anyone face-to-face! I thought the prospect of shocked tears (especially after a few glasses of wine with friends) was too high. I also was diagnosed pre-Christmas and the one positive of last year is that Santa was quite generous ;) I think I had (have) a harder time coming to terms with it similarly to @MSer

CurlyClaire

@CurlyClaire

I am loud and proud!!! Haha :-) My dad had MS and my brother also does both of them suffered greatly, so I guess I was used to MS. However it was still a massive shock when I realised I had it too! My friends have been amazing as I live on my own. My family are great though I want protect them. I am a nurse and have been lucky with work as they have been really supportive. It never crossed my mind not to tell them, I wanted to be up front and get support if I need it. I love my job and can't ever imagine being without it. I had difficulty in accepting my MS however with help from my MS nurse, and a few serious words with myself I reckon I'm nearly there! I now have no problem in letting others know I have MS, its a part of me and I'm proud of who I am. I have had no negative experiences so maybe I'm lucky. However ITS YOUR MS and your decision who and when you tell someone about it. Don't think about it too much when its right its right :-)

janep

@janep

@fourteen10- I totally get that- I worked in quite a big team when I was diagnosed and whilst I had no issue at all in telling them all about my MS, in the end my boss told most people for me as it was getting too much- I'd tell them, they'd cry, I'd cry, it was exhausting!