King of the Words!
I spoke about the power of a single word when I revealed my tattoo to you all in my last post. That word was HOPE. I explained the power of this one word, and the effect it has had with me since MS crept in to my life. I also spoke about the power of words when referring to someone’s ‘other half’, ‘partner’ or ‘significant other’ in a previous novel...sorry, I mean post! At the risk of sounding like ‘King of the Words’ (I just had an image of me yelling this from the front of a ship- Titanic style!), I’d also like to talk about another word in this blog.
Since my MS diagnosis, almost 2 years to the day of the relapse that sparked the discovery, I keep coming across this particular word in research papers, blogs. social media posts, fundraising materials, and general information on MS, that is really making me feel quite uncomfortable. That word? ‘Suffer (er) (ing)’. I’m not sure if I’m being over-sensitive, and I acknowledge that some people who have MS do use this word to describe themselves, but I’ve noticed the word being utilised mainly by the media to convey really negative messages about those living with MS.
When preparing this post, I thought I’d look up the definition of ‘sufferer’ in the Australian Oxford Dictionary and this is what I discovered:
“Sufferer: feel or undergo or be subjected to pain, loss, damage, etc. Permit, tolerate”.
Now I guess that’s actually quite an accurate description of living with MS. Yes it can involve pain, loss, damage, and by ‘suffering’ MS we are tolerating it, but I just feel that if I brand myself as an ‘MS sufferer’ then I am giving in to the disease more than I need to. I feel MS is having some kind of ownership over me if I adopt the term ‘sufferer’, and that’s the last thing I want it to do! Do we gain anything from being described (even by ourselves) as an MS ‘sufferer’?
I recall a quote from the movie ‘Still Alice’, a movie from 2014 about early-onset Alzheimer's disease where the leading character stated: “I am not suffering, I am struggling.”. This is how I feel with MS. Sure I have my bad days, and I can feel the struggle of living with MS, but that’s it- I am still living, despite having it. To say I am ‘suffering’ due to my MS feels like I have given up, and incase you hadn’t noticed, I certainly haven't done that, nor do I have any intention of doing so!
How do you feel about the term ‘suffer/er/ing’? Do you consider yourself an MS ‘sufferer’? Do you consider your Mum, Dad, partner, husband, wife, brother, sister, or friend who has an MS diagnosis to be a ‘sufferer’? I’d be really interested to hear your thoughts.