I have been both living with and writing about living with multiple sclerosis (MS) for a very long time now.
I was diagnosed some 24 years ago (and had symptoms for many years before that), and I’m into my 20th year of writing the column Life With Multiple Sclerosis.
After all that time, I do have to wonder if the experiences I relate are still relevant to the general audience of people with MS.
This was brought to mind by a recent comment on the Life With MS Facebook page. I’ll not mention the exact circumstances of the thing, so as not to make anyone feel bad. But it got me wondering about those of us with MS of a certain age.
How Times Have Changed for People With MS
We were diagnosed when there were just a handful of (if any) approved disease modifying therapies (DMTs). There are now nearly 10 times the number of DMTs available relative to when I was diagnosed, and 11 of those don’t require needles. Oh, how times have changed.
Back then, the hope was that the number of relapses might be reduced. Now “no evidence of disease activity (NEDA)” is the goal of DMTs.
Then, dial-up web searches were slow and inefficient and left some of us with more questions than answers. Today, with broadband, the world of research is at our collective fingertips.
Most important, and the point that the comment that sparked this thread of thought was making, is that my lived experiences — the hard-fought knowledge I share here and have recounted in my books — might very well (and, perhaps, hopefully) not be the experiences with which people diagnosed in the past few years, as well as those yet to be diagnosed, will ever have to cope.
Or at least not have to cope with to the extent that I and my generation of people with MS have had to.
Are Newbies With MS So Different From Old-Timers?
The same topic came up in a conversation with the publisher of my latest book, Living Well With Multiple Sclerosis, as well. Sales are a fraction of those for my first book about living with the disease, Chef Interrupted, which came out in 2015.
Could it be that those coming up behind me aren’t in need of the same information that I and my peers needed, because the course of their disease has been diverted in a way that we could have only dreamed of?
Is what I write about today, or what I talk about on the MS Ireland webcast, Unspeakable Bits, of interest only to an ever-shrinking audience beyond the halftime show of their disease?
Have we been segregated into newbies and old-timers when it comes to people with MS? Have we done that to ourselves? And if so, does it matter, because by the time the newbies become old-timers, will aging with MS be a wholly different thing?
Are My Experiences Still Relevant?
I have (perhaps justifiably) been accused on an occasion or two of writing about writing about living with MS. Perhaps this could be said of this musing.
But we all have opportunities to speak for and to the MS community, and I have to wonder if the path I walk and about which I write is one that will ever be tread by the next cohort of people with the disease. If it’s not, perhaps it might be time to consider letting others take up the flag and lead the next wave wherever medical science takes them.
I suppose it’s a question of relevance for all of us who volunteer for our cause. Are we doing as much good as someone else might do in our place?
Just the musings of an aging man with multiple sclerosis on a dull, Irish summer’s day.
Wishing you and your family the best of health.
Cheers,
Trevis
