By Dominic Shadbolt (theMSguide.com)
This is a follow-up to an article recently published on the MS Research Blog that you can read here.
Like much of life, people like the simple binary explanations. A is bad and B is good. Multiple Sclerosis has been tarred by this need for simplification. Cancer kills, MS doesn’t is the rough equivalent. Now the requirement for understanding the seriousness has been simplified into a life and death scenario it is much simpler to understand meaning one can get one with other things.
Having had Lemtrada (alemtuzumab) for my MS in May I was often faced with explaining to people why I had dropped out of sight for a bit. As a shorthand, I took to saying that I had had chemotherapy. Whilst entirely true, for that is what it is, I received baffling responses. Many from people who ought to know better and the general reaction was them pausing and exclaiming, ‘so sorry to hear that’ and, ‘oh no, are you ok?’ etc.
This is extraordinary because after 28y of having MS most people I know know that I have MS. Nonetheless, not a single person I tried this on imagined that it was anything to do with MS. Not even two cousins who are consultants in the NHS! To a person, they all leapt to the conclusion that I had had chemo for cancer and because cancer is a Bad Thing that meant there was a good possibility that my life was under threat. When I explained it was for MS a universal emotional decompression ensued and normal service was resumed. After all, it is only MS and it can’t be ‘proper’ chemo and everyone knows that MS doesn’t kill you.
This is anecdotal proof of my theory that, to the majority of people, MS is simply not a serious illness. Cancer is serious, MS isn’t.
Until MS, a chronic, progressively disabling, and incurable neurological illness is perceived as something serious then there are still significant changes in social attitudes required.
As well as focusing on research for a cure I believe that the charitable bodies in the field of MS need to lead this attitude change. MS is serious and should be perceived as such by everyone involved. Patients, clinicians, and charities.
Alemtuzumab is a monoclonal antibody. It started out life as Campath-1 used to treat chronic lymphocytic leukaemia. Although, its potential for treating auto-immune diseases like MS was also identified early on. After being bought and sold by a few different drug companies it is marketed under the name Lemtrada for MS.
Disclaimer: The opinions expressed here are those of the author and nobody else.
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