When I was diagnosed with multiple sclerosis in 2012, I held a pity-party-for-one over the next couple of years, and I am not at all ashamed to say I revelled in it.
It did me the power of good and helped create a personalised roadmap about how to learn to live with MS. I even started a blog about the process of coming to terms with it, in all its ugly and messed-up glory.
Of course, I did my utmost to remain as good a parent as possible. I just needed some time to come to terms with all the ways in which my life had changed forever, so I gave myself permission to be depressed, to grieve, to cry. Why wouldn’t I?
Other people however, had a different opinion. I was encouraged (directed) to remain positive, upbeat, to “fight this thing”. I was inundated with bookmarks, posters and cards emblazoned with positive, upbeat messages. All meant in the best way, I’m sure but I wobbled and wondered if I was on the right path.
Was I somehow a failure for not embracing this rallying cry to “beat MS”?
The problem with the positivity narrative
The trend for “toxic positivity” has gained enormous traction in our society. It demands that we paste a grin on our faces and display a supremely positive attitude at all times, no matter how destroyed we feel inside. To step away from this is to be deemed a failure. Drill down further, and this narrative papers over our feelings and insists that we keep quiet about anything remotely negative. Yet we are human, and this trend consistently refuses to acknowledge our very real human feelings of despair and sadness.
Surely, by avoiding anything negative, we are missing out on a golden opportunity to learn from our darker experiences. We can bottle our emotions up, of course, becoming exhausted from the constant requirement to display only our happy faces, and ultimately these repressed – and very real – emotions can gather under the surface and explode, often with serious consequences. By not facing any adversity, how else will this manifest itself?
Put simply, a novice marathon runner does not wake up one day and inexplicably run 26 miles. They agonise, go through punishing trials, and smash through the brick walls in their body and mind. The same analogy can be applied to any adversity, chosen or otherwise, as in the case of a chronic illness like MS.
It is a marathon, not a sprint, after all.
The day of diagnosis does not magically equip the patient with endless rainbows and sparkling joy. Far from it, in most circumstances.
Was MS my fault?
The concept of “toxic positivity” puts the onus solely upon the patient – it is entirely up to them how they “tackle” and “manage” their illness, and if they come up short, well, they didn’t “fight” hard enough. Tough. With MS, no matter how many positive thoughts I had, these would not change my lumbar puncture protein results or the numerous lesions popping up in my brain scan.
Did I fail to be positive?
This burden of “it’s all in your approach” can put an intolerable pressure on people already tackling seismic changes in other areas of their lives, from their work to their relationships to their future plans. Are you letting people down? Could you have done better?
I was sent scientific papers from well-meaning friends after I was diagnosed, alluding to chewing gum, Diet Coke, my eating habits, my place of birth, my genetic heritage (pesky Vikings), and my Vitamin D levels. To begin with, I read them and felt abject shame. I kept quiet. Surely, after having a parent who had died of MS complications when I was a very small child, I, above most people, should have known better? MS was obviously my fault. I extended my pity-party, to cope with this.
MS is a journey, NOT a battle
In time though, I began to learn how to set boundaries. I refused to engage with people who shied away from the reality of MS and those who insisted I maintain a positive mind-set. MS is messy, there’s no two ways about it. We fall over, we have incontinence accidents, we drop things. It’s not pretty, especially in the prime of your life, but it IS life.
I never took up a battle-stance to defeat MS: MS = Bad, Fighting MS = Good. Any illness is far more nuanced than a fight between good and bad. It is about being human, with all our inherent foibles. Instead of fighting a battle, I have learned to see MS as a type of journey most of us will travel at some point, MS or not; declining health, being mortal, the tragedy of the human condition.
The concept of a journey through illness is a comforting one, for me. Dispensing with the battle analogy is a relief; a journey allows others to travel with us, along with way. Journeys are interesting and we can stop off now and again for a rest and an anticipation of a new experience.
Paradoxically, an illness can, in time, be a chance to explore life, our infallibility and our very human limitations. Although, as in my father’s case, I am aware this does not apply to everyone.
Don’t tell anyone, but we will all face this scenario, MS or otherwise.
UK/MED/20/0178 June 2020