Forum

HOW do you describe your MS to other people?

My own doctor is uable to - and he has a father with MS.

Hello there.

If I am talking to friends or new people.

I simply stick to the basics and list a few issues.

I say it is a neuro issue or brain issue.

This causes me,constant pain,spasms,spastisity,weakness in limbs,slurred speach etc.

This keeps the conversation short and I think people then still turn and run...happy

If they want more detail I am cheeky and tell them to Google MS.

Charlie,x

 

 

 

This is difficult Marcus. I know only too well that to explain how bad MS can get can frighten the life out of people, as it happened to me and made my dx. a very frightening time.

Whilst on holiday in Spain a few years back I told people that I had a neurological condition, I felt that was enough and it seemed to work, as no one asked any more.

Most people tell me that I look well. Which I know I should be grateful but obviously am annoyed at especially when I’m feeling rubbish. Close family are concerned but then seem to ignore it, hoping it will disappear.What I’d like to say is "imagine waking up one day and your legs do not appear to be able to hold up your body properly and when you look in the mirror you can see yourself wobble and move. It’s got to be one of the most frightening things that can happen to a person, although I’m sure other Neurological conditions are just as frightening.

On the plus side, it is something that I now realise I have had with me for an awfully long time. Most of that time I was able to ignore it and live like everyone else, it is only the last few years when it has become difficult. So usually I say that MS can be very mild for a very long time and sometimes it stays that way. It’s the luck of the draw.

Wendyxx

Hi Marcus,

As of yet no one has actually asked me that particular question and hadn't thought of it arising. I think though if somebody did I just say it's something you don't want.

Janet x

Thanks for all your replies. I was meaning to respond yesterday but I forgot! - MEMORY is the one which I have to 'apologise' alot about and although (pre MS), I had been to the University of Aberdeen but it is to 'persuade' anyone that I am not (a la Mrs Brown's Boys) -  https://www.facebook.com/#!/MrsBrownsBoys   F*cking Stupid?

Marcus. x.

I usually say its a neurological condition where your own immune system attacks your nerve fibres.  Its different for everyone, not everyone ends up in a wheelchair, then describe how it affects me personally. 

Thanks to Charlie, Wendy & Janet - I do tend to 'better' understand what you are saying (because I've had MS for almost 14 years) but I sometimes 'struggle' even explaining it to those who are 'meant to be close' - 'my own wife' (an Optometrist) tends to think that I am making things up! 'Life is hard enough with MS' but having to 'explain it with MS' - makes it pretty much 'impossible' at times! (And as an aside - how the hell do you explain to an eight year old to stop hitting you so that you don't loose your balance?) - Although at most other times, she is gorgeous! (bless her)

Marcus. x.  

Thanks also to 'ggmarch' as well - your message only came through after I had 'posted' my last one? - Good explanation!

Marcus.

I don't 'usually' go to other parts of this website (maybe I should?) but one 'link' popped up -http://www.mssociety.org.uk/ms-support/practical-and-financial-help

and it was well worth it!

Marcus. x.

Hi Marcus, as you know i have been in the MS community, then out, back in and finally out again.

Yesterday I was asked why I am in a wheelie. I thought for a minute and said `It`s neurological damage.and it`s incurable`. The asker looked puzzled.

Now when I used to say MS, people seemed satisfied with that answer and that was that.

Imagine trying to explain Hereditary Spastic Paraparesis!!!!

luv Pollx

I'm always positive about it. It's different for everybody and some people only have a few problems and lead a relatively normal life whereas others are affected differently. I just say that I deal with really well, I have to take injections but it's ten seconds out of my day so it's not an issue! :)

Hello,

I try not to tell a stranger that I have MS, They don't understand and get frightened that they might catch it.

I say that I have a mobility problem or balance issues and try to leave it at that.

Local gossip usually lets other people know that I have MS.  I try not to talk about it, I'm bored by the whole thing

Hope that helps,

Patrick

Hiya

It depends who is asking and why they want to know.............

Ellie x

Hi Marcus,

Why does your wife think you are inventing things? Were you prone to making things up prior to MS? With your daughter, it should be easier - my mum was diagnosed when I was 16, so I was a bit older than your daughter, and could understand more in depth explanations, but your daughter has never known any different. Some of my friends have children about the same age as your daughter, and when they ask why I use a walking stick (in that direct way that children have), I just say that my legs don’t work very well, and I get tired very quickly - they tend to accept that and get on with what they were doing before. Kids don’t need long, complicated explanations - the simpler the better - with your daughter and rough play, just tell her, if you keep doing that, I’m going to fall over and I might land on you, so please stop, unless you particularly want to be squashed. Kids tend to be more accepting of things than adults.

Luisa x

Hi Marcus, I tend not to go into too many details, if it’s a stranger, I just say I have problems walking and with balance, if it’s someone that knows me they tend not to ask because they know or I guess if it’s someone new at work or at the school they tend not to ask me, they probably get updated by local gossip or maybe ask someone else.

My family, well we never speak about it!

I can so identify with your daughter. Last week my 7 and 10 year old were throwing and catching a ball (in the living room, yes I know they shouldn’t have been) and I said that if it hit me I would fall right over. I wasn’t annoyed with them about it, but don’t think they believed I would just fall over!

Cheryl:-)

Thanks again for all the replies - it only goes to show that I am 'not the only one' and that builds the confidence up, thanks. Mother and child are away to N. Ireland for Easter - leaving me in PEACE, PERFECT PEACE! (but they are coming home tomorrow - life goes on!)

Happy Easter,

Marcus.