scared, lost and no idea

after a year and a half of test after test, i was told on thursday i have multiple sclerosis, now alot of things that ive gone through over the years make sense, although it does, i dont know what to do, the dr told me that he will see me again in 6 months as whatever he tells me now won’t sink in, i feel like im up and down, lost, scared, angry, crying, wanting to ignore it hoping it will go away and disapear, its different being told that i stand a high chance of it being ms to being told im sorry but yes it is 100% ms, the first thing i asked the dr is can you get rid of it, i dont know why, but i just started crying, i was hoping they were going to tell me everythings ok, i dont know what to do anymore, who im supposed to tell or anything, i told my family, but mum n dad havent asked me about it, my sister is worried and my 2 brothers havent spoke to me since i told them, i just feel like my own family is alienating me for something thats not my fault, i cant talk to them now as i get the feeling that they dont want to listen or know what im going through and that other things are more important than how scared i am…i dont know what to do anymore

Hi Vicky :slight_smile: Hugs to you (((-))) I havent yet had a 100% DX (still highly likely), but of the people I have told I probably have MS, I found many of them acted very strangley afterwards - good friends and family - avoiding me and acting like it wasnt happening. It’s very upsetting. Even my own mother doenst seem to know what to say and is avoiding the issue. I think as well as yourself, people just need time to get used to the idea. From reading this board you do see that people adjust, and that life goes on in a modified way. You are what you are :slight_smile: Your friends and family will be there for you once they have got their head around it I am sure.

i hope so, its just bloody scarey with so many emotions and not being able to talk to someone just incase they don’t want to talk about it, it would be easier on everyone else if it just went away, im trying to ignore it as much as possible, sometimes it works, other times it doesnt, sometimes it doesnt seem real at all, no matter what i try to do im screwed

I think that maybe it’s almost as difficult for loved ones as for us Vicki. We have no choice in the matter, so at some point, like it or not, we have to get on with things as best we can. It’s easier to stay in denial if it happens to someone we care about but by not talking about it, it can all too easily become ‘the elephant in the room’.

My Mum has MS but I know that until/if I am dxd, she will avoid the issue.

They probably just don’t know what to say hun and will take their lead from you.

Hugs xx

Oh boy. Massive HUGS to everyone! As well as hello and welcome to Vicki and bubblesgalore

Even when it’s expected, being diagnosed is horrible. And it’s more than enough to get our own heads around without having to deal with other people too! The problem is that a lot of friends and family just don’t know how to react. Some are scared, some are morbidly interested, some go straight into denial, some are lovely, some don’t know what to say so start avoiding us, some are thoughtless and disinterested, some are plain mean, some don’t want to mention it in case it upsets us,… Most of all, they haven’t a clue what MS actually is or means and/or they have some very strange ideas (OMG, she’s going to die! OMG, she’s going to be permanently in a wheelchair 24/7 soon! OMG, I might catch it! MS, that’s that thing that makes you tired isn’t it; what’s she making such a fuss about?! etc - none of which are true!).

There isn’t a quick fix I’m afraid. I guess you have to tell them what you want - do you want to talk about it? do you want them to treat you as they did before? do you need help and support? do you need them to understand and help you to understand? The good 'uns will stick around and do their best. The ones who don’t, well they either just need some time or they aren’t worth it anyway. Try not to judge people by their initial reaction though - we’re all different after all.

I do recommend downloading or ordering some information booklets from here and/or the MS Trust. At some point (hopefully!), some of your friends and family will want to know more about MS and the booklets are a really good way of learning. Beware the internet - there are some crackpots out there!

In the meantime, there is everyone on here to “talk” to. We really do understand and won’t judge. If you need to speak face to face with someone, then your GP can organise counselling. There are also counsellors at some of the MS Therapy Centres (google them to see if there’s one you can get to). I thoroughly recommend counselling. I saw one when I was newly diagnosed and it was really helpful. (Saying that, there wasn’t an MSS forum then!)

Something that is very important: if and when you start reading those booklets about MS, please remember that MS is massively variable - the booklets have to cover all the symptoms, but no one actually gets everything! (And even the symptoms we do get may be mild.)

There is no doubt that MS sucks. It brings challenges that we would definitely rather not have to deal with, but once we get our heads around it, life does go on. More importantly, that life can still be good. Very good!

MS is not the end of the world.

I hope things get easier for you very soon.

Karen x

thanks for the great advice everyone, the state of my mental health isnt good anyway without this, i tend to block things out to forget so its safer for me, i dont know if that makes sense? i just think its better for everyone else around me now if i just dont talk about it so i dont go upsetting anyone and just ignore it now like it hasnt happened n just block it out the best i can from now on, i think thats the best thing, over the years ive been a bit of a pin and i dont wanna cause any more stress or problems for my family, thanks alot everyone, i hope you all take care

Hi Vicki

As Karen said things will get better, when I first told my husband that they had diagnosed me with MS, the first thing he said was ‘I’m not pushing you in a wheelchair’ I was shocked and said ‘I’m not asking you to’. Well that was 16 years ago and after that initial raction he has been brilliant, very supportive and he sometimes pushs me in my wheelchair. He can’t remember saying that but I think it was just a shock reaction.

I would speak about your MS to your family and let them know that you can live an almost ‘normal’ life and you can get some good leaflets from the MS society that explains clearly what MS is and the different symptoms that you might have. As life goes on you will probably talk to your family more about everyday things and the MS will only come into it if you feel ill. Take care of yourself and give into ‘IT’.

Lynne xx