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The many and varied experiences of living with MS

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Amy Bowen, Director of Service Development at the MS Trust, considers whether one person can ever fully represent the variety of MS experiences

Following the sad death of Debbie Purdy, which was reported earlier this week, I received a phone call from a man with MS. While recognising the determination and drive of her public campaign about issues of huge personal importance to her, he was concerned that the recent coverage would reinforce a perception in the minds of the public that MS is an unremittingly negative and crippling disease with an inevitable outcome of disability and premature death. He stressed, as in his own case, that this isn’t everyone’s experience.

What is life with MS like?

This is a real challenge for all of those living with MS or supporting, caring for or working with people affected by MS. How do you fairly represent the breadth of experience of life with such a fluctuating and variable condition, where the outcome for each individual is so uncertain?

Too much negativity and pessimism about the future is de-motivating and disheartening. It neglects the experience of many people who are living well with their MS and who, through specialist services, developments in treatments, accurate information and support with self-management, have real hope for a future where they can remain well.

Too much rosy optimism, though, will marginalise those who can’t or don’t benefit from treatments and whose disease imposes itself more and more on those activities that they value most.  They can feel that their experience is being ignored or, worse still, that they are some kind of unwelcome challenge to the project to change perceptions of MS.

Everyone’s experience is different

So, how can we respond to the request from the man with MS? How do we value and validate each person’s experience without trivialising or minimising the experience of another? How do we offer some balance?

For more than twenty years, the MS Trust has sought to represent a positive, practical, realistic and accurate depiction of life with MS, which respects the diverse experience of all those living with the condition, however they are affected. Our founders, a woman living with MS and a woman whose mother lived with the condition, believed that what is most important is that each person has the information, the treatments and the services they need to be as well as they can and to be as involved as they can.

Everyone with MS, however they are affected, can be actively involved in managing their health and can make the choices about their health that are right for them. Many, many more people living with MS have more options, more expert health professionals and more knowledge about their condition than ever before. Many people with MS will be able to stay well for much longer or perhaps never develop irreversible disability. This will not be true for everyone, though, and their experience is as real and as important. We must recognise that these are both truths about life with MS.

MS is a very varied condition that can have an impact on all aspects of someone’s life, not just their health.  The experience of no individual can represent this variety.  Debbie Purdy made difficult decisions about what she felt was right for her particular circumstances.  Others in a similar situation might make different choices.  Very many will not find themselves in this situation but will face a range of different choices about how to navigate through a life with MS.

As we look forward to a new year, we need to value all experiences of living with MS and to recognise the progress as well as the huge amount of work still to be done. Happy New Year and all of us at the MS Trust wish you well whatever your year brings you.

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