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Sharing MS

10 November 2015

Today I want to tell you about a recent experience of being totally open about my MS diagnosis in a very public forum.  Perhaps an odd story to relate when I’ve just posted (twice) on my views about disclosure!

I was recently invited to speak at the opening of an MS research conference in order to provide the delegates with a community perspective on why their work really matters.  It was the first time I’d ever done something like this, and it was a pleasant change from all the times I’ve spoken at conferences as a delegate myself.  Having an opportunity to stand up the front and be able to say anything I felt was appropriate, with no “right” answers and no important facts to get through was really nice!  In the ten minutes I’d been allotted I thanked the researchers for the work they are doing – in which people affected by MS are the end beneficiaries if all goes well – and then I tried to inspire them with some “pictures” of the many faces of those who live each day with MS.

I told them about a man I know who needs two elbow crutches to walk.  He’s got a great smile and a lovely sense of humour, and I look forward to catching up with him. He’s pretty slow and awkward at getting around these days, but what really stops him doing things is the overwhelming fatigue that rules his life.  When I asked him what was his number one wish for the researchers, his reply was simple: he wants a cure for fatigue.  Much as he’d be pleased to see an MS cure, he doesn’t expect a cure to undo the damage he’s already experienced, so that’s not top of his wish list.

It was really nice to see so many sage heads nodding along with expressions on their faces that seemed to say “yes – we know fatigue is one of the most important symptoms, and the one that really makes or breaks how well many people with MS are able to get on with their lives”.  Seeing how true my words were ringing was a lovely confidence booster as I moved on to my next “picture”.

I told them about one of my young female friends with MS.  How only three years after her diagnosis, she is already using a manual wheelchair.  About what a charming and positive person she is – and that one of her dreams is to fall in love, get married, and have at least one child of her own.  We’ve talked about what constitutes a good parent, and we both agree that she could be a terrific mum as she is today.  Then I told them I knew it was really, really hard for this beautiful young woman not to be scared about her future at times, given what the last three years have taken from her.  And I thanked all of them for any part they have played in the new MS treatment she’s going to start soon, in the hope of stabilizing her disease.  I could feel the positive vibes emanating from the clinicians (and all the parents!) in the audience, and I only wished I could bottle the feeling to take over to my friend’s place – I’m sure it would have given her a much needed boost as she prepares for the next step in her MS journey!

Finally, I told them a bit about me.  The “picture” who has lived the longest with MS of the three, and yet the one who still appears pretty much unaffected.  I challenged them that perhaps I was not what they expected to see when introduced to someone who has lived with MS for more than 13 years and who has lost count of the number of times I’ve had flares disabling enough to need IV steroids.   I reminded them that many people living with MS have mainly invisible symptoms, but our lives, too, are impacted by our diagnosis every day.  We may in many ways be the lucky ones, but we, too, thank all of them for the work they do.

It was lovely to have several people come up and speak with me after the formalities were over, and to learn that my words had struck a chord with them and, as I’d hoped, inspired them in their research.  I was feeling nicely warm inside about the job I’d done when an attractive, beautifully groomed woman who I believe was a neurologist, approached me and said

“Thank you – you obviously have a classic case of benign MS”.

I was dumbstruck.  The woman had never met me before.  I may have been brief in what I had told her about my own disease, but I simply couldn’t equate how anyone could call a diagnosis “benign” in someone who has been through so many flares, has fatigue that makes full time work impossible, lives every day with visual changes, mild spasticity, and poor balance – just to list a few of my symptoms.  I was so shocked by her words that I simply smiled and shook her outstretched hand before she turned and walked away.  And in seconds I went from feeling I’d done a pretty good first attempt at being an “MS Ambassador” of sorts, to feeling a complete failure for not calling her out on her insensitive and inaccurate assumptions.

Since then, I’ve stopped giving myself a hard time about it.  I know I did do an OK job.  The delightful male neurologist who took my hand and thanked me, then hung on to my hand for quite some time as he said “no, really, that was so lovely – I could see some of my own patients as you spoke, and it really did mean a lot to hear that from someone in your position” made the whole evening worth while.  And the majority of people who introduced themselves made it quite clear I had achieved what I’d hoped by giving them a little more insight into the many faces of MS to inspire them in their work. But I’m sorry I didn’t have an answer ready for the woman who believes anyone with MS whose walking looks OK has “benign MS”. 

I can’t hold myself responsible for whatever it is that makes that woman think her comment was in any way appropriate when directed at someone she knows almost nothing about.  But I wish I’d thought of a response before she walked away! I want to be better prepared if I ever meet someone like that again.  If anyone can think of a really good response – one that is respectful and polite but makes her realise why her remark was just wrong (especially for a so-called MS expert!) - please comment below with your suggestions.  I could use your help!

 

The Unaffected One

Facebook: www.facebook.com/unaffectedone

Twitter: https://twitter.com/theunaffected1

 

Comments (8)

It is hard, because she probably used the word 'benign' think you would find it reassuring, not realising how much this patronised and minimised your symptoms (I'm not saying she was right to, but maybe this is the reason?) Perhaps saying something like "Actually I'm doubt my MS could be classified as 'benign', but thank you for thinking enough about my symptoms to consider this option. My MS negatively affects my quality of life every day, so is certainly not benign or harmless.' (And then depending on the circumstances...) 'I'm happy to talk about the invisible symptoms if MS and how they affect people's lives more if you would like...' I am visibly affected by my MS so never get comments like you received. But I do get a lot of 'treatment has come a long way', 'just get on with life', 'I'm sure it will stabilise soon' (me thinking: really? Why are you so sure?) comments, from doctors (albeit not my MS specialist). I find these pretty upsetting as well, I think they are on the same spectrum of the comment you received.

Also well done at speaking where you did, and tring to give them an overview of experiences. Really nice to see they are involving people with MS.

Thank you! I was a little nervous when I was asked, but I also thought it really great to see them involving pwMS, so decided to do it. I was quite open about my professional roles, too, so I hope seeing a fellow physician / researcher speaking as a person with MS may have made a few of them sit up and realise this disease can (and does) affect people just like them!

Thank you - that's exactly the sort of response I needed! The idea of educating her politely ("I'd be happy to tell you about the many invisible ways MS affects me") is just what I was after. I agree with you that she was entirely well meaning in her comments, which is one of the reasons I want polite / respectful ways of responding - and your suggestion is perfect, thank you. Sorry to hear that having visible MS doesn't protect from those unhelpful comments.......perhaps there is something about the person who utters them feeling uncomfortable and not knowing how best to interact with us once they learn we have MS? Maybe if we all take your approach of gentle education there will be fewer such comments to deal with one day? Lets hope! :)

Hmmm. Benign like a tumour, or benign like a dictator? From a textbook perspective I guess she was right. From a medical professional's point of view, the definitions seem to be mostly about time and walking capacity. But then nearly everything in MS seems to be imposed on us by people who don't actually have the disease. Given this negative experience, if you could change the terminology around MS to better reflect patient perspective and lived experience, what might be more helpful do you think?

Thanks Lawrie. It's a long time since I was studying for the physician's exams, but there was nothing right about her use of the word "benign" based on what was taught back then. We were led to understand that a small subset of pwMS had a "benign" course, based on lack of relapses and lack of any disability despite many years living with the disease in the absence of treatment. It was acknowledged even twenty years ago to be a completely useless word in the context of MS, as no one could be claimed to have "benign" disease until things have gone on for decades without any problems developing. I had disclosed clearly in what I said that I am on treatment and have had numerous flares and live with disabilities - although most of mine are not mobility related (and by many people's standards might be considered minor). But I'm sure you're right - her assumption was based on the belief that if you can walk OK, you have nothing wrong with you. It's yet another example of why I think language is so important and so easily hurtful - and of me taking someone else's comment to heart when it was most likely meant as a throw away line. I hope all of us involved in the training of health care practitioners (whether in a professional role or as patients!) are doing what we can to educate people not to assume they understand a person's experiences based on very limited information. "How does that affect you?" is so much more appropriate (and respectful) than "Clearly that doesn't affect you."!!

Well done UAO for getting up and speaking. Sadly there are many people like the one you had the "Benign" experience with. However there are many more who will be inspired by your words. I'm sure you did more than an OK job, you would have been amazing!

Thanks for that lovely vote of confidence, Rebecca - much appreciated! It was a very positive experience apart from that one brief interaction, and having "put my toe in the water" I don't think I'd hesitate to do it again if another opportunity like that came up. Thanks to a few sensible suggestions here and on social media I now feel a bit better prepared to deal with any "but you look so well" people if I meet another, which is great!