Succeeding as a Disabled Person Without Being 'an Inspiration'
If my story was part of an inspirational movie, dramatic music would play while I’d look meaningfully into the camera and gush about how becoming chronically ill changed my life for the better. I’d clasp my hands together and preach about how my condition helped me to discover more about myself as a person, and then waltz off into the sunset with a handsome prince and some kind of small fortune due to a dramatic plot twist.
Instead, this is real life. Rather than waltzing off into the sunset, I maneuver an unreliable wheelchair along a questionably uneven pavement. Instead of finding a handsome prince, I concentrate on finding the most qualified medical professionals to manage my condition — with bonus points if they happen to be attractive, of course. And my plot twist isn’t a small fortune: it’s not knowing if, when or how I will ever get better.
Being a classical ballet dancer as a child, I grew up learning that in order to succeed in my vocation, I had to push my body beyond its physical limits and never let up, not even for a second. When I first became poorly with a mystery illness at the age of 15, my natural instinct was to adopt this same approach. By mentally squashing down my symptoms as best as I could and pushing on through, I thought my body would remember that people “like me” just don’t get ill… right?
It wasn’t until four years later that the system finally backfired. I was knocked down by a sudden onset of debilitating fatigue and pain attacks, orthostatic intolerance, chest pain, endless migraines, extreme sensitivity to noise and light, cognitive function difficulties and much more. After becoming confined to my bed, unable to care for myself, I was finally referred to a specialist, rigorously assessed, and diagnosed with a neurological condition called myalgic encephalomyelitis (ME).
Now, the typical understanding of medicine implies that after the diagnosis of a debilitating condition, a plan is made and treatment is begun. The problem here is that a fluctuating disease like ME does not progress along a set path. A lack of research means that as of now, there is no prognosis, targeted treatment or cure for the condition. So off I went back to my dark, quiet room at home, wondering where exactly things would go from here. Many people with ME have remained in this stage of uncertainty for years. They’ve been diagnosed with the condition and discharged, sometimes decades ago, and haven’t been able to leave their homes, or even their beds ever since.
Fortunately, I was one of the luckier ones. I made small improvements over time, and with plenty of support and adjustments, was able to return to university, finish my degree, and tentatively enter the world of (part-time, home-based) employment. Today, I’m still suffering a great deal and my way of life is very much different from my peers, but there’s no doubt I’ve learned to find happiness in my own way.
However, one thing that’s become apparent throughout my chronic illness experience is that as a society, we’ve become so conditioned to view disabled people to be “an inspiration.” People thrive on stories of people “overcoming their limitations” and succeeding, ideally by running a marathon or some other concrete physical measure. Non-disabled people use us as references to feel better about their own lives, as if living with disability is so unthinkably tragic that it puts all their own troubles into perspective.
This has never sat right with me. For one, it seems like hypocrisy at its very core: often, those who weep over the inspirational marathon runners turn out to be the same people who point the finger at those who claim benefits or tut disapprovingly at Blue Badge holders with invisible conditions. And this way of thinking doesn’t really account for people like me either: the ones in the middle of the spectrum, learning to adapt to life with a long-term condition with no definitive end point in sight, no matter how strong-willed they may be.
I had a good think about all this during my bed days when I was feeling at my worst, and later decided to pursue a little project of my own: Spoonie Survival Kits — “spoonie” being the slang word for somebody with a chronic illness. I created little bags of happiness that would endeavor to remind others just like me that they are not alone, they haven’t been forgotten, and somebody is thinking of them. Since 2015 I’ve sold these kits online, donating 50 percent of proceeds to chronic illness charities, and contributing the remaining funds into sustaining the enterprise. I’m so pleased to say that the project has gone from strength to strength; we’ve created accessible volunteering opportunities, increased awareness of debilitating long-term conditions and raised thousands of pounds for various chronic illness charities. It was also from here that my own advocacy opportunities really began to arise.
I’ve always been a writer, but around this time I realized I wanted to branch out from writing only on health and disability. Living with a long-term chronic illness has taught me to find humor in even the most unfortunate situations, giving rise to plenty of what are now well-known among friends as “Life of Pippa” moments. Therefore, I decided to launch my own blog of the same name featuring some of my favorite things: theatre and books, as well as lifestyle and fundraising.
From publishing my first post in January 2017, I’ve had more opportunities than I ever thought could come from a personal blog, and I couldn’t be more thankful. Particular highlights include the release of our own charity book “Dear Chronic Illness,“ being a Jane Tomlinson Woman of Courage finalist at the Yorkshire Women of Achievement Awards, and most recently being named a #BeInspired Champion at the prestigious Olivier Awards – nothing will ever top that day when Catherine Tate talked about my blog on the telly.
But most importantly of all, I’m so privileged to have the kindest, most thoughtful online community of support: the fact that thousands of people actually take the time to read my posts and support my projects still baffles me in the very best way.
It’s taken five years for me to realize there’s nobody else’s path to follow but my own. I don’t have to be a marathon runner who “overcame” their illness to make my condition valid. I don’t have to conform to the non-disabled public’s understanding of disability to be a success story. I’m doing what I can with what I have, and that’s plenty. To anybody reading this who’s ever doubted themselves or questioned their worth because of long-term illness, I think you’re rather marvelous. You are more than enough.
This story originally appeared on Life of Pippa.