By Rachel Horne
For all of us with multiple sclerosis, our story is the same.
One day we got sick and we never got better.
Instead we were plunged into the strange hinterland of chronic illness – located between a headache and terminal cancer – where our disease won’t kill us, but it will never go away; where we will undergo treatments, but never a cure – and where we will always be a patient.
In her seminal essay Illness as Metaphor, Susan Sontag describes this transition. “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick… sooner or later each of us is obliged… to identify ourselves as citizens of that other place.”
The writer Nancy Mairs, who had MS for more than 40 years, is more succinct, calling it in her book Waist-High in the World – “a country to which no one travels willingly.”
It is a crossing more of us are taking. Dramatic improvements in public health and the widespread use of antibiotics and vaccinations have meant fewer people are dying younger (data from ONS) – which means more of us are living longer with chronic, life-altering diseases such as MS.
And our MS lives are better and more ‘normal’ than ever before – thanks to earlier diagnoses and a host of effective disease-modifying treatments. We stay in careers, have children and raise families. Remember it wasn’t so long ago young women with MS were emphatically told not to have children as it would cause greater disability. Now we know this is not true (Dobson et al. BMJ 2019).
Yet one could argue the experience of living with a permanent illness is poorly understood and little discussed. It has even been neglected by philosophers due to its “unwelcome and demanding” nature, writes UK philosopher Havi Carel in the Phenomenology of Illness. This, she believes, should be rectified as the study of illness sheds light on ethics, political philosophy, and human experience.
So what is the experience of permanent illness like?
Physical and mental
For one thing, the mental part can be just as difficult as the physical. People with MS not only endure a raft of bodily symptoms, but also mental ones that remain long after the disease has been controlled.
“In cases of illnesses such as MS, patients must live a lifetime of uncertainty, anticipating what may or may not come next – a state called ‘limbo state’ loss,” says Mila Tecala, a grief and loss counsellor in Washington DC. “And most people don’t handle the limbo state loss well for a long time.”
Having MS also dramatically increases the risk of depression, according to the American Academy of Neurology. Part of this extra risk comes from MS damaging nerves in the brain, and part comes from the experience of living with a complex disease.
Relationships change. With MS you are likely to take time off work, cancel arrangements at the last minute and be overwhelmed with symptoms like fatigue – which makes it impossible to be the same employee, friend, partner and parent you used to be. Some relationships end while some become stronger – as you find your true support network.
But, it’s the relationship with yourself that undergoes the greatest shift. Suddenly you are confronted with an image of yourself that no longer exists, while long-held goals and plans are overturned. Gradually a ‘new’ version of you emerges – but that takes time.
The rules change when you are diagnosed with a life-long illness. You become, as the Canadian sociologist Erving Goffman wrote, stigmatised – an outsider in the world of the healthy: an object of pity, fascination and even doubt.
“To be ill is to be suspect,” says Katie Willard Virant, a psychotherapist in Missouri. “What did you do you cause your illness? What aren’t you doing to cure it?”
For example, how many times have you been told with MS “But you look so well!”? At its best, this statement is dismissive of the myriad of symptoms you may be experiencing inside – the pain, the fatigue, the vertigo. At its worst, it implies you are not actually ill, because you don’t look it – ie no wheelchair.
This chimes with Barbara Stensland, the MS blogger and author of Stumbling in Flats. After her MS diagnosis, she was surprised and hurt by the reaction of the parents on her son’s rugby team. Despite being a single mother and struggling with bone-crushing fatigue, dodgy balance and wonky hands, no one asked if she wanted help.
By comparison, another mother was diagnosed with breast cancer at the same time and was overwhelmed with support. Stensland’s conclusion: “There is an illness hierarchy and MS languishes somewhere near the bottom.”
We discover people are keen to give us advice on how to heal our disease. Over the years I have been urged to try yoga, acupuncture, positive thinking, a diet free from (fill in the latest fad) through to a faecal transplant as a way to fix my MS.
When I reply that MS is an incredibly complicated disease (the word ‘multiple’ is apt in more ways than one), and I am happy with my neurologist’s treatment plan, some become quite insistent they are right. So please – no more unsolicited advice. Which leads me to…
Having a chronic disease like MS can be very lonely. While those around you try their best, it is so valuable to connect with fellow MSers who intimately know what it is like to be permanently sick. They will also answer questions, connect you with other resources – and provide you with a safe stigma-free space.
Living with a chronic illness does make every day more difficult. Sontag aptly described it as “a more onerous citizenship.” And given the chance, I would return to the kingdom of the well – a place I happily resided in for 43 years – in a heartbeat. But that likely will not happen. So instead I take each day as it comes – and appreciate it all the more.
Rachel Horne is a journalist who has MS