There is an acute vulnerability in sharing your trauma. Disclosing an illness that is so often mired in stigma to the entire world helps erode misconceptions and takes immense courage. Such is the case with Christina Applegate, who recently announced she has multiple sclerosis (MS), a diagnosis she received a few months ago.
So little is known about MS that when high-profile women such as Applegate and Selma Blair share their individual journeys with the disease, it can be incredibly powerful and eye-opening. Over the last few years, Blair has detailed her harrowing unedited versions of living with MS, remiss of Hollywood glamour. She shows the devastating effects the disease can have when all medical options have run out.
No one is immune to illness. Not even celebrities. Yet harmful stigmas about disability mean many people choose not to speak out. For example, it took The Sopranos actress Jamie-Lynn Sigler 15 years to disclose that she had MS. There is huge societal pressure to fit a certain able-bodied mould. Difference, physically or neurologically, means people are often marginalised, our competencies too often queried.
My own journey with multiple sclerosis
First, let me explain what exactly MS is: it is a progressive neurological disorder affecting the central nervous system. Our overactive immune systems are slowly attacking the protective layer of the nerves causing irreparable damage. This can result in a huge range of symptoms from vision and mobility loss to pain and spasms. MS is particularly difficult to diagnose, which means it’s hard to understand.
I went to numerous doctors over a five-year period. I had numbness and tingling in my feet. Some days it felt as if ants were crawling up my legs. My torso went numb for months; I was told it was a strained muscle. When I exercised, my eyes would glaze over as if floating in a fishbowl. So, I got glasses. I saw a chiropractor and was told I needed to be more flexible. I had a colonoscopy and an endoscopy. I had CAT scans. I was still no closer to finding out why the entire left side of my body was numb, but doctors simply left me to my own devices.
I eventually found a podiatrist who “fixed” me. Every time the foot tingling and leg numbness came back, he would manipulate the nerves and I would regain sensation. This was my pattern for four years.
But in May 2019, while living in Bahrain, where I grew up, my left hand went completely numb. I was nearing the end of a stressful year of teaching and studying full time at an international school. Playground duty felt like wading through volcanic magma as the intense heat seared my body.
The symptoms persisted, so I was sent for an MRI scan. As I waited in the neurologist’s office staring at the monitor, the years spent watching Grey’s Anatomy meant I knew the white dots littered across my MRI brain scan didn’t look “normal”. They were lesions, scar tissue from years of MS activity.
The shock of receiving an MS diagnosis in the midst of moving back to Ireland meant I trudged forward in denial, which ultimately resulted in new symptoms, two hospital trips and what seemed like silos of steroids. Seven months later, Covid-19 hit.
Living through a pandemic with MS
Navigating a chronic illness in the midst of a pandemic has definitely had its challenges. It has meant grappling anxiety, uncertainty over medication access, bad news about MRI scans delivered over the phone, sporadic blood tests, changing disease-modifying treatments and cancelled neurology appointments.
For those of us who are at high risk of severe illness from coronavirus, attending hospital for treatment has been terrifying. Yet, as I grieved for my health, it made me realise how lucky I was that I had been diagnosed before the pandemic. How fortunate that I was on medication halting the progression of my illness.
The many misconceptions of MS
There are a lot of myths about MS based on outdated information. Presumptions over what qualifies as disability are sadly commonplace.
Most people get diagnosed in their twenties and thirties, so MS is not an “old person’s disease”. People think that if you don’t have symptoms you don’t need to take medication. Yet, the sooner you start medication, the better the disease outcome.
There are those who think if someone’s disability isn’t visible there isn’t anything wrong with them. Like so many, my perception of MS was that I would ultimately need a wheelchair. Actually, about 85 per cent of people are diagnosed with "relapsing remitting MS" and most never end up losing mobility.
Relapsing remitting is the type of MS I have. It results in episodes of new or worsening symptoms followed by periods of recovery. A more debilitating form of MS, primary progressive, is usually diagnosed in people in their forties and fifties, after a steady worsening of physical abilities. Unfortunately, as there are no approved medications for this type of MS in most countries worldwide, it can be profoundly disabling.
The way we consume information has changed and if the pandemic has shown us anything, it's that social media is rife with quackery. Kale and cannabidiol, or CBD, aren’t miracle cures, and celery juice doesn’t quite cut the mustard.
It's people like such as Applegate, Blair and Sigler who can help eradicate the mysteries around MS, spark conversations and educate people on the day-to-day intricacies of living with the illness. They can promote advocacy around MS and highlight existing research. Women are three times more likely to get MS than men. In sharing their stories, it could inspire women with similar symptoms to seek advice or treatment.
Of course, for anyone, especially those in the public sphere, it is nerve-racking to be so transparent, especially when telling someone who can influence your career or when embarking on a new relationship. Disability discrimination is very real and it's important people only tell others when they feel safe to do so.
For me, it would have been more stressful to conceal my diagnosis, and I find secrets tend to rear their ugly heads when you least expect it.
It can be hard when people don’t understand your limitations, as MS is like the proverbial iceberg, much of it hidden. The disease also manifests itself differently depending on the person and the unseen impact on quality of life is frequently misunderstood. But there is a hugely positive ripple effect from self-disclosure, and celebrities sharing their diagnosis can help to normalise disability and illness.