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King of the Words!

29 September 2015

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.

Cheers,

Sam

Comments (11)

Thanks Sam - I totally share your view on the importance of hope! I also sense a bit of an Uninterrupted "theme" coming along........the next blog post I'm planning to put up (and probably the one after that, too) is all about communication. I'm really enjoying your posts! TUO

Thanks TUO :) Communication is such an important aspect of MS I think, whether that be between family and friends, workplaces, or healthcare professionals. Some really great posts over the past few weeks from everyone.

Thanks Sam! What a great post. I agree that I feel uncomfortably touting myself as a sufferer (hence my frequent use of the word "diagnosee") but then again, I'm at the very early and mild end of things and feel incredibly hesitant to speak for those much more significantly affected. I also agree that suffering sounds incredibly passive. Struggling though - I think people would empathize with that notion more, because EVERYONE struggles with something.

Yes I feel very similar Sarah, and certainly can only speak for myself in my early MS stages. I just wonder if anything is gained by adopting the term 'sufferer'. Would be great to read some insights from those who are comfortable using the term. Thanks for the reply!

Hi Sam. I recall (somewhat indignantly) adopting your attitude 6 years ago when I was new to MS and could still function relatively well (despite undreamed of difficulties), but back then I had absolutely no concept of what suffering was. I am much more intimately acquainted with the concept now. Suffering is relative and personal, and what may be unbearable to one may not be considered so by another. Even Victor Frankl in Man's Search For Meaning asserted that we still have choice over our attitude to suffering, but that was not to deny that the person suffered nevertheless. He felt that one could find meaning in endurance of the suffering itself. When someone gave me a copy of Frankl's book, I knew I was in a bad way and that all anyone saw for me was a change in attitude! I try to remember that it may be wise to consider that this a chronically progressive disease over time in most cases with no known cause or cure, and if anyone could overcome it with a positive attitude, it would be front page news (despite what well meaning friends might say). Hope is important, and a positive attitude, but If a person is not one of the lucky ones with a benign course, then adaptation to suffering is something which must somehow be learnt. There don't appear to be any instruction manuals. If you don't feel yourself to be suffering, I am very glad, and I too hope that long may you continue to do so...

Thanks for the insight Lawrie, I was hoping to hear the other side of the story. I really appreciated you sharing the words of Victor Frankl too, that really does make a lot of sense. And I guess that's what my post was trying to work out in terms of the choice to use the term 'sufferer' (which of course everyone has) - I've just been wondering what someone gains from adopting the term themselves? Is it comforting to acknowledge suffering? As you say, you can't overcome MS with a positive attitude, but does it make it any more bearable to adopt such an approach ? I know during my relapses I've tried to maintain a positive attitude, largely because I figure adopting a negative frame of mind wouldn't change my circumstances anyway.I'd be interested to hear your thoughts on this when you have the time. Thanks again for the insightful comments. (PS I'm also off to order a copy of Frankl's book)

Yes, I think I see. I suppose it's part of the verbal landscape and it's often a term used by others to describe PWMS, so I'm not sure it's a conscious adoption of the term by the individual. It is perhaps a handy single word (as opposed to a phrase) which encapsulates neatly what happens to a person with MS (especially in advancing stages). As you have explained, there are two meanings - to experience something negative, and to tolerate something. Objectively, PWMS do experience something (or many things) negative, and there is usually no option but to tolerate it, so it's quite an accurate and neutral term. Perhaps people may use the term as verbal shorthand so that other people understand what they are experiencing without going into details, and that it is very real, and intensely difficult, and needs genuine understanding and assistance. If PWMS are not suffering, why help, why look for a cure? To imply that someone with intense physical and psychological and social and financial difficulties that has been imposed on them by a disease is not suffering may trivialise their experience? Another subset may use the term to acknowledge their suffering, that it is real, intensely difficult, but that there is dignity in the endurance of that suffering and they are going to do their best to overcome it nevertheless. If you don't feel yourself to be suffering, then you are not really doing anything extraordinary, or transcending anything? But if I understand the core of your post, you are more concerned with the psychological value the person assigns to that or the posture they adopt? Do they not just experience and tolerate the negative impacts of MS, but does it overwhelm them? In that case it sounds like you have adopted Frankl's approach, that there is dignity in the experience, and that if it changes you, it will be for the better. Good on you!

Great post! I think your idea of what we tell ourselves is so valid. We can open the door to negativity at times by accepting one negative thought and end up in a spiral. In saying that I love Lawrie's points, I have met so many MSer's who have been where you and I stand, in the early stages, progression slow who stood firm believing they would fight and survive, only for their MS to turn that corner and progress quicker than you could sneeze. For them it becomes about the reality, they really are 'suffering' and their fight is hitting the 10th round and getting up off that matt is just at times now unbearable. Our view points are so relevant to our own journey with MS. Such individual, incredibly different journeys.