Tsunami

I attend - intermittently - a couple of local support groups for people with MS.

They can be informative, helpful and reassuring. But they are not for everyone because they can also be rather overwhelming. 

An intense melting pot of different people, views and opinions from vaying points along the MS timeline - from the fear and optimism of the newly diagnosed to the varied experiences of the five-years-in to the cynical battle-scarred veteran.

Walking into a group soon after diagnosis can be very difficult: while coming to terms with your own news you are faced with people you don't know at various stages of disability.

Of course, as times goes on, you learn that their disability will not necessarily be your disability and their experience is unlikely to exactly mirror yours, but that first meeting can have a massive impact.

Fifteen years into this palava, I think I sometimes forget how I felt at diagnosis. The symptoms are so familiar now, drug names trip surprisingly easily off the tongue and the fear has dulled to a constant low level rather than the insurmountable mountain it was at the start.

So it was a wake-up call on Monday night when a relatively newly diagnosed person joined our group. They were undoubtedly still reeling from the news.

There were welcoming chats and commiserations from around the table and there was plenty of sharing of diagnosis stories, meds experience, MS tips and promises of helpful support. And it was all massively well-intended. 

But when I spoke later to our newbie, it was to hear that any medical appointments they'd been to had left them feeling that they were at the mercy of an information tsunami, overpowered by leaflets and facts and figures.

And, after a bit of reflection, it struck me that it was entirely possible that they might have left the support group feeling exactly the same.

As members of the club that no one wants to join, we're so desperate to support and help anyone who has had the misfortune of swelling our ranks that it can sometimes feel as immense and suffocating as the diagnosis itself.

Maybe some people don't want to hear of yet another helpful leaflet or super-dooper gadget or harrowing lumbar puncture experience. Maybe they're at a point where they've had to process too much.

Support groups can be wonderful - but perhaps they need to come with a warning flag system.

Some people may feel ready to wade into the waves of support. Others might just need to know they're not going to drown.

:: Tsunami by Manic Street Preachers