I have just been diagnosed with ms and whilst I have been joking about it with friends and family, just making light if it, when I am on my own I find myself being upset and scared, I don’t have anyone I can talk to about it as they don’t what to say or understand what it is I am going through, all I hear is how it will be ok and whilst that is what I want to hear, but I know it won’t always be like that but did others have this same problem? How have you coped best? I am a born worrier, but I am very self deprecating, would you suggest just carrying on joking and laughing about it and burying my head in the sand. I know there will be hundreds of links the same as this, but any advice or a link to a similar story would be fantastic. Thanks jimmy
Hi Jimmy, I’m a bit of a worrier too, and like you am only just dc (2 months). It’s not easy but I’ve tried to make a decision that no matter how much or how little I worry about it or feel miserable about it, I’m still going to end up at the same place. So I may as well get to that place trying to enjoy life as much as I am able. Don’t get me wrong, I do have down days but I’m trying to be as positive as possible. The odd rant on here helps too. There’s always someone who gets just what I’m feeling. Take it one day at a time. Life goes on, may be just a bit differently than you expected. Take care.
Hello Jimmy and welcome, It’s easy to joke about having MS but please don’t bury your head in the sand. When we are all first Dx it’s hard to really take it in, but tell people of your worries otherwise they won’t understand your fears. It is not an easy Dx to accept but there are plenty of brochures you can get for free from the MS society which you could read and pass on to your family, which would help them understand what can happen. But remember everyone is different and suffer different symptoms. If you feel lonely or need to have a moan, come on here, there are lots of wonderful people only to ready to comfort you and advise you. Just remember you are not alone you have us. take care and get plenty of rest Janet x
Hi Jimmy, and welcome
I’m not sure there is any “right” way to deal with a diagnosis of something like MS because, let’s face it, it is one hell of a thing to deal with However, if keeping it light with your family is making you feel alone and scared in private because they don’t really understand, then I really think you should consider letting at least one or two people in and telling them the truth. This forum is brilliant because we all understand, but there is nothing quite like talking to someone face to face.
As Janet said, there are some great booklets about MS that you can download for free from this website (you can also order hard copies for free). The MS Trust also do excellent booklets (again, for free). Why not order a few of them, ask for a full or partial family meeting or pick just one or two people to have a chat to? An opening like, “I know I’ve been joking around, but I’m actually a bit scared” might break the ice and you find that they’ve been thinking likewise, but didn’t want to worry you. In that way, getting it out in the open might help them just as much as you. Just so you know, people react differently when someone they love is diagnosed and their reaction is often not what we’d have expected of them so you may find that you get support from the unlikeliest person whereas the person you thought would be a brilliant ally is firmly in denial and really doesn’t want to (can’t) talk about it. Remember that any less then helpful reactions are absolutely no reflection on you or on how much they love and care about you though - and it usually gets very much easier as time goes on.
If you aren’t ready to talk to your family or friends, then you should find that your GP is happy to help, either to talk to you him/herself or to refer you to a counsellor. I saw a counsellor early on and it was absolutely brilliant.
One thing: when you start reading about MS, please bear in mind that MS is massively variable and so the booklets have to cover all sorts of symptoms that you may never get. No one gets everything! And, although it might seem like an easy platitude that an oldie might tell a newbie just to reassure them, it is the absolute truth that for the vast majority of people, MS really is NOT the end of the world. Yes, it sucks at times, and yes, it presents us with challenges that we would rather do without, but it is still possible to live a long, happy and fulfilling life. Life honestly can still be good.