I’ve been living with Veronique, my partner for the last two years who has MS and I have learnt so much about this unpredictable disease and what it is like for her. There’s lots of course she can’t share; her actual person experience of having MS for one thing.
Veronique is a yoga teacher and dedicates a great deal of her time researching and developing a resource for other people with MS, mainly but not exclusively based on her experience using Yoga to treat the symptoms she experiences.
One thing we spend many hours talking about is how to speak about MS and from some of the discussions I’ve seen on the internet, and some pretty forthright responses to Veronique’s work, both positive and not so positive, my impression is that this is a very delicate area for many with MS.
We have been particularly preoccupied with trying to find the right way to describe the potential of various treatment strategies for living with MS. Do these strategies heal, cure, treat, tame, or overcome MS? Or do they help you recover from, live with, adapt to, accept, or even transcend MS?
Just how high can we reasonably aim? Is it OK to say MS can be cured? Is it OK to say you can overcome MS? Or is it more accurate to say it can be tamed or controlled? Or maybe we should be learning to live with it, learning to accept we have MS and finding peace in our acceptance?
Are people with MS, MS Survivors, MS Sufferers, MS’ers, MS Patients. Are they sick? Have sickness, ill, chronically ill, disabled etc. etc.
Of course any combination of all of the above is also possible!
Whichever way you choose to go you can be pretty sure that some people will not agree with the way you see it and will actually be upset with you for not seeing things their way. Veronique and I, for example, don’t want to upset people – but we do want to offer people hope and share with them the possible benefits of making some changes to their lifestyle. Even though there is significant evidence to support our views, we still find that associating lifestyle changes with better health – when it comes to MS at least, is still contentious. Some people evidently feel this means we are telling them it’s their fault they are not getting better. (For the record we are not.)
So what should we say? How should we speak about MS?
Well if there is one thing that all of us living with or near someone with this disease is that MS is more like a family of diseases than a single condition or illness. And the range of symptoms and the impact these can have on someone’s life can differ tremendously, from person to person and from day to day. MS is a moving target – it’s a shape-shifter, always defying any attempt to nail it down.
And not surprisingly it seems the effectiveness of many of these strategies for living a healthier life with MS vary greatly depending on a myriad of factors. Some of which we understand and a tonne of which we don’t! These are heady times for people studying neurological illnesses. Every week there is another research project linking almost every possible human activity to Neurological disease. But most brain scientists or clinicians will tell you that what we know about the brain is completely dwarfed by what we don’t know. I recently read the human brain is the most complex object in the known universe. We have so much to learn.
Given that MS is not one thing, that manifests the same way for everyone from day to day, it makes sense to me at least to recognise that there is no ‘right’ way to speak about it that will match everyone’s experience all the time.
Given this, I think the best we can do when we write or speak about MS is to be true to our own experience, whilst having enough humility to recognise there is much we don’t know, and there are people out there with MS as we speak or write, who are having a very different experience of MS, which is just as real as our own.
And inversely I think this points to a mindful way of listening to other people when they write or speak about their experience of MS. I think we need as listeners or readers to be open minded and recognise that how someone expresses their experience of MS may not chime with your own experience, but it may still be equally honest. I’m not offering any guarantees here, but by showing that generosity to others it may actually open us up to new ways of seeing MS and what’s possible for ourselves, even when we can’t actually recognise the other person’s experience as one’s own.
There is finally one other reason I think it’s worth making the effort to be inclusive and make room for other voices and perspectives on MS. And that has to do with Community. Most of us facing any life changing event need help. We need each other. Our shared experience as people with MS or people living with people with MS can be such a valuable support for each other, with a richness and empathy other groups will be less well equipped to offer. That is why it is in my view so important we are open and willing to respect the view of others who we share MS with.
Veronique showed me once an impassioned interaction online between people with MS who were arguing strongly about whether or not someone could die or not of MS. Back and forth the argument went with the tone getting less and less friendly. Until a young person who was recently diagnosed and just joined the group, contributed by saying how upset she was to read this discussion and how she was looking for support – not this. I feel the community, temporarily at least, failed this vulnerable young person when it could have offered her the support she was looking for.
That’s why I think it is so important we are first and foremost to be kind to each other, and respectful of the experience of others.
Lots of love,