Don't let MS steal who we are.


While I kind of agree that MS shouldn’t rob us of personality, individuality, creativity, relationships, careers, etc, etc, the truth is that it does. Or does it?

Being diagnosed with MS does not per se rob us of any of the above. I was at my most productive, creative and earned the most money post diagnosis. But as disability moved in, I couldn’t work anymore. But it wasn’t MS that took from me, it was disability.

Partly, I’m seriously disabled because I couldn’t take disease modifying drugs, even when they became available. So I suffered relapses that might not have happened with effective DMDs. Some people newly diagnosed will never have severe relapses, will never have to live with disability and will not have changes to their lives such as I’ve experienced. The therapies now available are, for many people, wonderful.

Then again, some people would say I’ve gained in some ways through having MS. I’m perhaps more understanding, more empathetic, more generous with my time and thoughts.

And perhaps I haven’t had any real change to my identity. Maybe neither MS nor disability have stolen anything from me. My friends who knew me pre and post MS would probably say I’m still the same person. Sometimes moany, sometimes filled with happiness (or maybe that’s just gin?), sometimes funny, sometimes serious and worried for the world. Sometimes I’m self pitying, but I don’t often let that show. Maybe I should?

But saying there’s too much negativity on this forum isn’t totally correct. People having terrible experiences need an outlet. People whose lives have changed immeasurably need somewhere they can express their grief and sorrow at what they’ve lost. So expressing negative thoughts is partly what this forum is about.

Maybe there’s actually less negativity than you might see at first glance anyway. Even posts that begin with negative thoughts often alter as people join in the conversation. I’m reminded of the recent Negativity winning thread. It began with sadness and sorrow. Gradually it changed to beautiful images, humour, music suggestions and ultimately cake and chocolate.

By no means am I shooting you down in flames Tally. But maybe I have a longer experience of this forum. It’s a wonderful place really. As someone who spent hours and hours writing on the Brain Fog thread, which had nothing whatsoever to do with negativity, and an awful lot to do with fun, I don’t see negativity on here. Sometimes I see people who are hurt, or feeling desperate, or depressed. And often I see the greatness of people, in all our weird and lovely different ways.