motorsportpete 18/05/15
Last reply 3 years ago
Telling people about MS

After two years since I was diagnosed I’m finding it easier to talk about MS but I’m still finding it hard to tell people I have MS I told somebody once and the first thing they said was “oh so you are going to end up in a wheelchair then” which is something I don’t like hearing and when I explain to them about my fatigue they think I’m lazy I do admit I struggle most days but hate it when people say things like that it gets me down I don’t want to keep the fact I’ve got MS to myself maybe it’s me not explaining MS right to people I just don’t want people to think that having MS means that there is no hope for me

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stumbler
3 years ago

@motorsportpete , unfortunately, MS is one of those “taboo” subjects that don’t get talked about. Is is just one of those facts of life, like death, which is never openly discussed.

The frustrating thing is that MS isn’t like death. It’s just another one of those aspects of life that needs to be managed, just like money.

You’ll find a couple of publications here, which might help you, http://www.mstrust.org.uk/shop/products.jsp?catid=47 , notably “A short guide to understanding my MS” and “Telling people”.


motorsportpete
3 years ago

That’s great thanks yeah you are right it is a taboo subject as people don’t like to talk about it


northernlass
3 years ago

Hi @motorsportpete I’ve struggled to tell a lot of my friends about me having MS. We were all meeting up a lot in 2013 for old school reunions (arranged by me so had to be there) then relapse started or what I thought was a bad back.. (That bit is true too 🙁 ) and so started to need a walking stick. Turned up to one re-union I didn’t arrange with stick.. not drinking as I drove and only stayed a few hours.. but didn’t tell anyone of my old school friends about me having MS. Since then I have told a total of 8 friends and they have been fine about it.. some questions (and yes the wheelchair one…!!) and some just “oh okay” and we move on… !!! But I have decided that I will only tell people when 1: it’s necessary and 2: it is of benefit to me that they know otherwise I just say I have a bad back..!!! But when I do tell people I say.. “It’s not a secret it’s just my personal medical information so I don’t tell many people” 🙂 Maybe we should all get T-shirts printed…. 😀 Best wishes


cameron
3 years ago

I think @northernlass has got it dead right. Why do people need to know? I’m sure some are just nosey. Some of the people I have told I have immediately regretted doing so. And it can’t be unsaid. IMO we have enough on our plates without worrying about how people will see us.


motorsportpete
3 years ago

That’s is true I’ve got a lot more important things to worry about than what people think most can’t understand what it’s like to have ms


madelene
3 years ago

Personally, I really struggle with this one. I’ve remained very secretive about my dx, only immediate family know and unfortunately I just don’t think they get it, and a couple of long distance friends who I trust impeccably, yet rarely see (they have been great). Although I’m not sure that this is the correct approach for stress levels / wellbeing etc. My family’s reaction has informed my approach to date along with advice early on in dx about not being able to un-tell people. As I say, I’m not sure it’s a good approach, especially when I’m asked directly about duff walking and dodgy eyesight etc and the reasons I give! Sorry for not have a more positive response, I’m still working it through.


tabbycat
3 years ago

I feel that have lost friends since telling everyone about having MS. It is not that they dont like me any more, it just that they dont know what to say and are mildly embarrassed. They think they will say the wrong thing, so they avoid me. It is oddly similar to the embarrassment many people seem to feel when talking to someone who is bereaved. At break time at school peole dont want to sit with me and no one includes me in social plans because I have cried off so many times. I try not to let it get to me, as I reckon they weren’t good freiends anyway. My husband and my cats and my garden are my best friends; but in retrospect I do regret having told so many people and having found out how shallow most people are.


rose99
3 years ago

I try to be selective about who I tell. I take it on a case by case basis and decide on the spot if that person needs to know or if i even want to tell them. I find that sometimes it upsets people and becomes their diagnosis as well and I have to comfort them instead! I must say though, i prefer that to the awkward silence you can sometimes get as they don’t know how to react or what to say….. It has definitely got easier with time (was diagnosed 3 years ago) but I have found that I am careful and selective who I actually tell. Hope that helps and be well xxxx


motorsportpete
3 years ago

I’m the same too have told people about my MS then you find out what they are really like some now avoid me but I’ve now found out who my real friends are so at least some good has come from it


northernlass
3 years ago

Well I think it’s good that “WE” know you have MS and “WE” also know what it is like to have MS so consider “US” your friends (be it virtual friends..!!) and there are a lot of us and there is always someone here ready to listen (read…) and try and support you like a good friend should … Best wishes you lot 🙂


sleach47
3 years ago

I was also diagnosed 2 years ago. We know there are many ways MS affects us, my symptoms mean I need a stick to get around, so inevitably everyone feels that they can ask what’s wrong with me. I’ve got used to it and find overall most people are embarrassed with my reply and the subject ends there. I’ve found those that care and are genuine friends see more than the MS. I’m lucky to have great people around me who all accept me for who I am. To be honest, it’s those around me that keep me positive, reminding me of what I can do and not focussing on the negatives, just accepting the changes as they happen. We’ve got enough to focus on, don’t worry about what others think and stay positive.


maryklou
3 years ago

I’ve has MS for 6/7 years (feels like forever), when I was first diagnosed I was always too embarrassed to tell people, I only told my family and a couple of really close friends. I use to think if people knew they would start to treat me different and to be honest it wasn’t something they had to know. Sadly, my symptoms got worse over the years and so my walking & balance got worse and for the past 2 years i have had to use a crutch. This obviously raised a lot of questions from people like ‘oh no what happened to your leg..’ I did think to just say I broke my leg but then I thought who cares if people know, as long as my close (true) friends support me and don’t treat me any different, nothing really has to change. Luckily everyone I know and have met, have been really supportive any no one has treated me like there’s something wrong with me. Most people don’t really know what MS is so when I do tell them I have it at least it’s raising awareness for us 🙂

@northernlass love the T-shirt idea lol


anawith1n
3 years ago

I tell everyone, it doesn’t bother me, I tell strangers, I love to see there reaction on there faces. I don’t say MS I SAY MULTTIPLE SCLEROSIS!
I have a massive sign at the back of my car KISS GOODBYE TO MS with a big set of lips. People ask me why are you limping? Straight awAy I say it’s my MS ( multtiple sclerosis) there faces change. Listen ur right stay away from negative people and u will know who ur true friends R. I have MS for 16 years now my bad smelly buddy.
All good need to smile more often.
Anawith1n


hollylb10
3 years ago

I find it hard to tell people. The main reason being is that I don’t want people’s sympathy or I don’t want them to be predicting my futute in their minds and see me in a wheel chair. Some one asked me if it was the wheel chair disease once, I then had to sit there for 15mins educating this group of friends about MS. Luckily they are friends that don’t judge and I always knew I would tell but it makes me think about the friends who I don’t trust so much and then I can’t be bothered to explain myself or my MS over again. One friend got it confused with ME and said ‘at least it’s not like this other disease where you progressively decline and end up disabled!’


drag0nsparks
3 years ago

Hi All, just wanted to share that where I am living, out of 5 million of us there are only less than 200 of us having MS. So when I was diagnosed with MS myself, I heard this word “Multiple Sclerosis” it sounded so alien to me! So so alien that I wasn’t scared at all when the doctor said I had MS. It was only when I slowly developed more symptoms that I knew what MS is all about and really it is unpredictable and scary at times! So to say, people around in Singapore still doesn’t have a clue what MS is and only those working in the healthcare probably knows.

I used to live in the dark about MS, I do not open up to people around me about my having MS but as the years passed (I’m 25 now and has had MS for 6 years now) I am slowly opening up and talking to MSers from other countries. The online community has actually helped me more on coping and dealing with MS than people around me. NOT a single person understood the pain and complication of having MS. But however, my loved ones of course did their best to help around with my MS symptoms like “irritibality” for example. It was very difficult to explain to them why I was so annoyed most of the time.

And my mom, she opened me up to a better environment as she was the one who push out the awareness of me having MS to my relatives, her friends. From her doing this, I get a lot of attention and support. People would suddenly come out to me and said, how am I doing and if my MS symptoms are OK and all. You know that feels nice because people care about me more when they knew that I have a rare disease in this country in their own circle of people.

Most importantly, people tell me they pray for my safety and health and happiness when they find out I have a rare disease. Yes they may sympathize me but for all I know, this thing brings out the humility in me because I’d think, “Yes, I have a chronic disease and yes sometimes I’m a wreck when I have symptoms and I am never perfect. I fight for perfection even though I know I am able to grasp it. But it is okay as long as I remain humble and down to earth. Life is going to be fine. Exposing my MS also helps people realize that they are lucky in ways and they should not ever compromise on health and take life for granted.


Anonymous
3 years ago

I always tell people if it comes up. I’m not embarrassed and I find that most people are genuinely interested and I’m happy to answer any questions. Because the vast majority of the time no one would know I had anything wrong with me, people are amazed that I even have it. I really, really don’t care!


joojoo
3 years ago

I think it’s good to be as open about it as you are comfortable with yourself.
I find it is other people’s reactions to the knowledge that I have MS that is the worst thing about having it – especially when you tell them face to face. Ameliorating other people’s woes and fears about something they know very little about is hard work, but if I don’t tell them and explain it in ways they can understand, I kind of feel like I have let myself (and fellow MSers) down.
For World MS Day yesterday, I shouted about it openly on social media. I’ve come out of the closet publicly, so to speak, and I feel like a could do a lot more to promote awareness of it.


motorsportpete
3 years ago

Thanks for some great comments think I’m still going to tell people about my MS as I want more people to be aware and understand what it’s like to have MS


tracyd
3 years ago

I have told everyone about my diagnosis, friends, family and work, I explain to everyone that MS is an Auto-immune disorder, I explain the symptoms I have, the treatment I have and had, and what my hopes and fears are. We had people view our house yesterday who asked questions about the village we live in who then asked me ‘if it’s so great why are you selling up’ my response was immediate, that I’ve been diagnosed with Multiple Sclerosis which is affecting my balance and my legs and that we have a 3 story house …. not ideal so we are being practical now while we can take our time and do it properly rather than having to make panic decisions later on down the line.

Part of the reason that MS is such a ‘dirty secret’ or ‘the elephant in the room’ is because it’s not talked about openly for fear of sympathy or because it might make people treat you differently etc. It’s invisible yet people do so much to hide it from the world as well making it not only difficult to see but covered up like a dirty shameful secret.

I’m proud to be ‘OUT’ about my MS, I tell people about Lemtrada, that I fought to get it because it give me a way to fight MS, not be it’s victim, I let people see my desire to fight and not give up, I hope that it will inspire people to get involved, understand more about MS support people they know with MS in a positive way and make it something that like cancer makes people want to fight for and surround with positivity because they want to support the fight. My friends, family and employers are all with me in this …. they’re helping and supporting me fighting this shitty illness, I suspect if I just sat and let it do what it wants then they’d watch me decline with a sad ‘oh well if you’re just gonna lie there and take it I feel sad for you’ look and I would deserve it.


mcgibaqt
3 years ago

I told no one until I had it’s taught in my head. And now I tell people if it comes up… I find people are genuinely interested and because I’m ‘not bothered’ about it they seem to be the same x breathe. X


katjay
3 years ago

I don’t tell people my health conditions as I don’t like explaining , nor will I probe other people . If I tell people they usually forget as I look relatively Normal. If /when I got bad I think I’d be honest , but as long as I can get away with it ,it’s my business.


drag0nsparks
3 years ago

Katjay, you are damn right about looking normal on the outside. My mom tells me she always didn’t think I actually HAVE chronic disease because I look normal. Or perhaps I always try to be normal when I am actually not >.<


leachy
3 years ago

I was diagnosed with MS 3 years ago this month. I was so upset about it. But I went to the classes for the newly diagnosed people and it was good. I found out a lot of things that can help you. Yes you are right when you tell people about your MS they look as though they don’t acknowledge it but I think they do, some people just don’t know what to say and the people that just say you will end up in a wheelchair are just ignorant to how hurtful it can be.

I find I am okay in the mornings if I have a good sleep, I try to eat healthy which I think is vital in keeping the weight off, because I don’t have the same energy as most people I can’t burn the calories as good and I find that hard. Apart from that – I adapt to my MS -whenever I go out I make sure I know where the toilet is, I have a table near the door, in the cinema I always have an isle seat so I can get out easily enough. I have drop foot – which really irritates me, I fell in work the other day, it’s embarrassing not only for me but the people I work with, but I learn to cope as best I can.
I don’t have terminal cancer – at the moment I have a choice on how to live some people don’t. This is how I cope


upstatefan
3 years ago

Telling other people is such a hard thing to decide on. I’m generally a very open person, so I can’t help sharing things about myself. There’s been a few people i’ve regretted telling, but most people have been supportive. Sometimes it has been kinda awkward right after i tell them. But as weeks go by they recognize i’m still the same person, and our relationship goes back to normal. I’ve been lucky my coworkers and supervisors are understanding.

I’ve found the hardest people to deal with are the ones who care a little too much. People who have an overactive mothering instinct. Then every conversation has to start with how your feeling, and going on about it when there’s no need.

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