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Newly diagnosed. Very confused..

I got diagnosed last thursday…

Hi everyone. I dont want to bore you all with me, etc… im 32 and a bloke living in London. I mostly recovered from my last episode; I had two before which were then undiagnosed, dating back to when I was in my 20s. Since diagnosis I have now, of course, entered a new chapter in my life. I am not sure whether to connect with the society, and whether this is a good idea for me.

I just wondered if there was anyone else who was in a similar predicament. Many of my friends are finding it hard to relate to my newly diagnosed condition, and my family all seem to be panicking. I am currently trying my best to get on with things as normal.

-Rowan

Hi Rowan,

(My nephew’s name is Rowan!)

I’m sorry to hear about your diagnosis. It’s only been a week, so I don’t think you need to decide at this point how involved (if at all) you want to be with “The Society”.

You can get involved as much or as little as you want, and your needs and preferences may change over time, too. So you might find it quite daunting, at the moment, to meet up with a load of other people with MS - but there might be times in your life when you would like to. So you don’t have to decide today, for the rest of your life, how much you want to interact. That may well be a changing thing.

As you’ve no doubt discovered by now, you don’t have to be a member of the MS Society to use the forums. Some are, some aren’t. I was a member for about the first year after diagnosis, but didn’t feel I got a lot out of it, so I didn’t renew my membership. Doesn’t mean to say I won’t ever rejoin. I just don’t feel a compelling need at the moment.

And even if you do decide to become a member, it’s very much up to you how involved you want to be. I’m sure some people eagerly look for meetings, and other social activities. Others may just want to be kept abreast of the latest research, but not go to a meeting, club, or activity day, ever at all.

Reactions of friends and family can be rather odd, to say the least. Some react as if you’re certainly going to die - and soon! Others react as if they didn’t like your news, so they will just pretend they didn’t hear it, and make no reference to it ever again, so it’s the elephant in the room!

These forums are a godsend for things like that, because no matter what weird reactions you get, someone here will always have had similar, and be able to reassure that no, you’re NOT going mad - some friends and relatives really do react in bizarre ways!

I think the first week I was diagnosed, or thereabouts, a friend wrote making no mention I’d just been diagnosed with MS, but instead asked how my cold (which I coincidentally also had) was. You can imagine how baffled I was by that. I’ve got MS, but she wants to know about my cold?

Fortunately, folks here could see the funny side. Not much happens that somebody else won’t have had similar!

Take care,

Tina

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Hi Rowan In the same way as you need time to adjust and get your head a bit straighter, so do your nearest a dearest. My experience would say, that it certainly brings out the best…and be prepared for…the worst in people. It definitely clarified who the important people where in my life. As for the society…I use this forum a lot for information and research on MS but also to chat like this. I don’t know anybody with MS so find the forum invaluable for info but also for having a vent or whine on bad days, to reassure me and also to have fun too !! Xx

Hi Rowan and welcome.

I agree with everything Tina and MrsH have said. Give it time. It takes ages to get used to having MS and is a bit of a rollercoaster at the beginning. Some days it will seem ok, other days you’ll feel in a panic, on other days it will go up and down all day. This is a normal reaction.

That’s when this forum is so helpful. When you feel in a panic you can come on here for reassurance. When you have questions you can come on here to ask us… the experts!

As for the family and friends, they will also need time. Most people know nothing about MS and what they do know is based on myth and misinformation. It would be worth printing off the fact sheets on here and giving them to family… or just leave them lying around if you don’t want to make a big deal of it. You will find them here:

Also look on the website of the MS Trust which has some great publications too.

For now, come on here whenever you feel the need. You don’t need to make a commitment.

I can promise you one thing Rowan, it will get easier in time. Go with the flow. Accept the emotions as they come up… and if at all possible, talk to someone about how you feel.

Pat x

Hi Rowan, and welcome :slight_smile: I just wanted to add a couple of things. First thing is to warn you off local MS Society branch meetings! In my experience, on the whole, they are more like OAP get togethers! The MSS do run things for younger people (by that they mean people 18-40 roughly) in London from time to time so they might be worth going to. If you are near Hillingdon, I’m part of a “younger” break off group that meet regularly (go to the gym, the pub, have the odd bbq, etc), but our current youngest is 36 (our eldest is 61, but you’d never guess :-)) so you’d be welcome to join us. There may be something like that near you too, but I’m not sure how you’d find out other than looking on facebook, etc. But, as the others have said, there’s no need to jump into the MS community - just play it by ear. Second thing was to tell you about the post-diagnosis “housekeeping” in case no one has told you yet: you need to tell the DVLA about your diagnosis (they normally put us on a free, three year, renewable licence) and you should check your paperwork for anything that might have a critical health clause (eg your mortgage) because MS is a payable condition. Diagnosis takes a while to come to terms with. Take it one day at a time. You’ll be OK. Karen x

Sorry you have joined the club that no one wants to join.

As others have said, other people’s reactions can be odd. Some people just blank it out, some catastrophize, some just run a mile, some say, ‘MS? That sucks. Let’s have a beer.’ The last sort are best. But most people just simply do not know what to say or do, an that can leave a person feeling a bit isolated. Don’t worry about it. Happens to everyone, and things will settle down as they (and you) get used to the idea.

I think this forum is great, because there are always people on here who have been in the same boat without you having to say an awful lot - I have always found great support on here and I hope you do too. If you don’t want to plunge into face to face MS soc stuff, but want to be around people who have experience of some of the issues and troubles, this forum can be a good option.

Alison

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