What’s in a Name?

I am reminded of the old joke line – “I don’t care what you call me, as long as you don’t call me late for dinner.”  When I was first diagnosed with MS and became involved in the online communities, it took me a while to get comfortable with the names that we use to describe ourselves and others who live with this miserable disease.  It is hard to find titles or labels to call people that don’t misrepresent us as individuals or calls our community something which it is not.

MS patients ?  We are not always patients, and we are definitely much more than just patients;  it is difficult to refer to us as a group as MS patients.  MS sufferers definitely has to go – I’m not always suffering from the MS and this conjures a very pathetic image.  The same goes for MS victim – yes, I am an innocent bystander caught in this MS battle, but I don’t ever see myself as a victim of MS.

Eventually I settled in to call our community individuals  ‘People with MS’  or abbreviate it if I am writing it over and over –PwMS.  Even that feels awkward to me at times when I need to find the phrase to describe those of us who have MS but have so much more going on in our lives than this disease.

I would much rather  acknowledge  us by name – Laura, Lisa, Steve or {insert your own name here} –   because having MS is just one small part of us and we are still the same person we were before the doctor told us we would live with this disease.  However it is easy to see how impractical  doing a roll  call of our names would be, so there remains a need for some type of  group label.

It turns out I am not the only one who wrestles with this question.  A group of researchers  in the United Kingdom looked at this same dilemma, searching for a bias free, neutral term to call all of us with MS when they are writing about our population.  In the paper  MSer – a new neutral descriptor for someone with multiple sclerosis,   David Baker, et al, they write the need  for an acceptable  name is being driven because lay people are more and more engaged in reading scientific literature and also serving  on boards that review and approve such research.   They  call this ‘public engagement in science’ and discuss how these days abstracts, press releases and even full studies  are often read by non-science people who just happen to have MS and who may be offended by the labels assigned in the work they are reading.

In a sampling of social media and through surveys of people who have Multiple Sclerosis, they came up with the recommendation that in studies and reports we now be called MSers.  I don’t know about you, but to me being an MSer  sounds like I have membership in some biker club or ladies tea group or at least needs a secret handshake and membership card.

For some reason, MSer conjures up images for me of the vintage advertisement  for the soda Dr. Pepper (click here for a sample)   – but instead of “I’m a Pepper, he’s a Pepper’ it ends in my head with wouldn’t you like to be an MSer too?

I know it is well intended, but MSer seems odd to me, but ultimately  be it PwMS or MSer, it really doesn’t matter to me as long as they continue research and writing about our needs and looking for ways to improve our lives.   And  of course, don’t forget to call me to dinner.

Wishing you well by any name,

Laura

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