MS and identity. We know what MS does to us physically – but what about to our self?
Receiving a diagnosis of multiple sclerosis is devastating. Full stop.
The disease course is varied and unpredictable – and we humans we don’t like uncertainty. There is no cure; medical treatment is limited and the symptoms are wide and diverse. In addition, the onset of MS often occurs in young adulthood when people are not prepared for physical limitations and disability.
Then there is the profound impact that MS has on our sense of identity. Without warning or choice, we are forced to undergo a transformation of our self. Taken-for-granted values and beliefs are shaken; positive self-concepts are replaced by negative ones and we find ourselves estranged from our physical body.
It is this disconnect which has interested thinkers for centuries. Two thousand years ago, the philosopher Epictetus wrote: “For what is it to be ill? Is it that you are near the severance of the soul and the body?”
More recently the sociologist Michael Bury described chronic illness as a “biographical disruption” while the philosopher S Kay Toombs – who has had MS for 45 years – views it as a series of losses: “the loss of wholeness, loss of certainty, loss of control, loss of freedom to act and the loss of the familiar world.”
To illustrate her last point she writes: “the bookcase outside my bedroom was once intended by my body as a ‘repository for books’; then as ‘that which is to be grasped for support on the way to the bathroom’, and is now intended as ‘an obstacle to get around with my wheelchair.’” (The Lived Experience of Disability).
Not surprisingly, people with MS have high rates of depression and anxiety. We also are – and it pains me to write this – nearly twice as likely as the general population to commit suicide (see Prof Giovannoni’s recent post: https://multiple-sclerosis-research.org/2019/06/unassisted/).
And yet… some people with MS manage to adapt and even thrive despite all the disease takes from them. Somehow they find new meaning in their life, forge new identities and preserve a sense of self. The biographical disruption heals.
So how does this happen?
The key appears to be acceptance of the disease – followed by the process of adapting or, as sociologist Kathy Charmaz defines it: “altering life and self to accommodate physical losses and reunify body and self accordingly.”
Charmaz says this happens in three stages. First, by experiencing and defining impairment; then by making bodily assessments and identifying trade-offs and finally – by relinquishing control over the illness and flowing with the experience of it. She also writes that adaption doesn’t happen just once, but continually due to the episodic nature of MS.
Many with MS find their family plays a key role in supporting this identity reconstruction; others draw on previously established social groups – such as those linked to family, work, community, sport or religion – for help. While some derive much benefit linking up with MS support groups and communities.
Take Robby Khullar, 49, who was diagnosed with MS when he was 19. For the first 16 years post-diagnosis, his disease-course was seemingly benign. He had his own business which he loved and cycled everywhere. Then came a series of relapses – which left him with cognitive issues and dependent on a wheelchair. He was forced to sell his shop. His life became “empty,” he says.
Fast forward fifteen years. Now he seems so resolutely upbeat. How? “MS forced my hand. It made me realise what is important in life. It also made me think about how I wanted to lead a good and meaningful life.”
These days he spends his time volunteering for Shift.ms – the social network for people with MS – and the Samaritans, the suicide-prevention charity. “Volunteering makes me feel useful – not useless. If I didn’t have that, I would have nothing.” He also emphasises the positive. He is still living independently; he has supportive friends and he considers himself fortunate compared to some people in the world.
Natalie Kanji, 37, is even more emphatic about how MS has changed her life for the better. “MS is the best thing that ever happened to me,” she says about the disease she’s had for two decades. Five years ago, she felt very differently. She was severely depressed after a major relapse forced her to leave her career. Friends drifted away. Walking became difficult.
In response, she “totally shut myself up” and started to think about who she wanted to be. “For many years, I didn’t know who I was. I wasn’t being honest. I always opted for the safe zone. Now I do what I want,” she says. “I love my life. I understand myself.”
For Toombs, it is these stories of healing that we should pay attention to. For too long in Western society, she says, a person’s worth has been judged on their ‘doing’ – how much they produce or their professional status – as opposed to their ‘being.’ As a consequence when people with a chronic disease find they can no longer ‘do’- their sense of self-worth plummets.
This is not helpful, Toombs says. She points to herself in her wheelchair. “I would score high on the Kurtzke Disability Scale meaning I have serious disability… but this does not correlate to my personal wholeness and meaning which I consider much more important.”
The answer, she says, is to promote healing. This, she defines, as restoring and preserving personal integrity and wholeness even in the face of an incurable illness. “You can be cured and not healed, and you can be healed and not cured.”
By Rachel Horne