I Sometimes Feel Defeated By My Disability – And That's Okay

Our society labels the disabled community as either superheroes or scroungers. The truth is most of us are living somewhere in the middle, writes Pippa Stacey.
Courtesy of Pippa Stacey
Courtesy of Pippa Stacey

Last month, Sport England and a number of partnering charities launched a new campaign aimed at people living with long-term health conditions. We Are Undefeatable, they called it – making a statement on behalf of the millions of people living with these illnesses in the UK.

As a member of the long-term ill population myself, it seems about time to share my own story of physical fitness and chronic illness: one I don’t particularly like to think about too much these days, but which accurately reflects my apprehensions about this new scheme.

I was diagnosed with my long-term illness, ME/CFS, at the age of 19. However, my symptoms first began appearing in a much milder form during my early teens, after glandular fever and a severe anaphylactic shock sent my immune system into crisis. Each time I approached my childhood GP, trying to find the words for the debilitating fatigue and pain were gradually gaining control over my everyday life – the cause of these symptoms was very much placed on myself.

Due to a lack of understanding about the physiological markers of the condition that we now know to exist, I was kindly yet firmly advised to increase my physical activity level by walking an hour a day and increasing my activity – advice which ignored the fact I had been professionally training for a career in classical ballet for about 40 hours a week... for most of my life.

“The more I was trying to proactively increase my activity levels, the more irreversible harm it was doing to my body”

Knowing no better and wanting only to make these symptoms go away, I took this advice and did my best to further improve my fitness levels. However, rather than seeing my capabilities increase (as you would expect as my physical strength improved, right?) it was incredibly frightening to observe the exact opposite; each time I walked or ran a considerable distance, I found that I could do a little less the next time. I could no longer get through intense but achievable dance combinations I’d practically been doing in my sleep for the last year. The more I was trying to proactively increase my activity levels, the more irreversible harm it was doing to my body.

Knowing what I know now about my condition, thinking back to this time is difficult. In lieu of the answers I was looking for, I was actively encouraged to do more damage to my body by those who had a duty of care towards me, because of the inherent belief that prescribing exercise is always the answer.

Ultimately, the reinforced idea that my life-altering symptoms could be overcome by pushing hard against what my body was telling me led to the rapid decline in my health: the relapse which swept away my mobility in my early twenties and saw me become an ambulatory wheelchair user. It’s incredibly difficult to think that this outcome could potentially have been avoided.

Courtesy of Pippa Stacey
Courtesy of Pippa Stacey

So, to see the new We Are Undefeatable campaign launched online, can you blame me for having conflicting emotions? While there are of course positive elements to the campaign, reinforcing the idea that small, individualistic actions are the way forward, my heart sank at the thought of how this campaign could be interpreted by the non-disabled public.

We unfortunately live in a society that continually splits the disabled community into two camps: the inspirational superheroes, ‘overcoming’ their ‘limitations’ to climb mountains and win Paralympic medals, and The Rest: the ones seen as benefits scroungers, as the ones ‘who don’t help themselves’, the ones who are a drain on society. All of these ideas are helpfully perpetuated by the media, as was delightfully demonstrated in the reporting of the Undefeatable campaign that I saw.

There’s a remarkable lack of awareness of the grey area: the fact that disability is often fluctuating and highly individualised. There are any number of factors that influence a person’s condition and their subsequent capabilities, something which consistently goes unacknowledged among the non-disabled public.

“Do people really think that the idea of exercising or getting more active simply hasn’t occurred to disabled people?”

Do people really think that the idea of exercising or getting more active simply hasn’t occurred to disabled people? Do they think it’s purely a choice, or down to sheer laziness, that those with long-term conditions are often not as visibly active? Did they really think that preaching about what we should be doing, as if they knew more about our own lived experiences than we do, was really the answer?

For me personally, I’m proud of how I’ve adapted to life with my chronic illness, but nothing will ever fill the hole that ballet left. It was and still is a huge part of my identity and to-date, nothing has come close to replacing it. I will never not crave the satisfaction of reaching a new personal best, or the roar of applause after nailing a performance, or the euphoric feeling of endorphins coursing through your body after an intense workout. If I genuinely thought there was an affordable, and (most importantly) safe and sustainable option out there that meant I could one day experience this again, I would take it in a heartbeat. And despite my current stance on this campaign, I’m by no means resistant to being convinced otherwise.

However, launching a campaign encouraging people to get active, no matter how well-intentioned, isn’t going to take away the debilitating symptoms I and many others live with on a daily basis: the same symptoms that mean that rather than the intensive 14+ hour training days of my former life, even once simple household tasks become a challenge. When your muscles feel like heavy blocks of concrete and all your blood pools to your feet when you stand up, simply making the bed or unloading the dishwasher can leave you struggling. When you’re only granted a limited amount of energy per day, you have to make choices: and even when you err on the side of caution, there’s still no guarantee that you’ll get things right. One minor over-exertion could leave you insufferably unwell for days. And if non-disabled people could experience that dark place themselves for even one day, they would understand why it isn’t a risk to be taken lightly.

Courtesy of Pippa Stacey
Courtesy of Pippa Stacey

I’ve come to learn that not pushing my body beyond what it’s telling me has been the key to successfully managing my long-term condition. The fact that I’m not well enough to participate in sport and activities I could potentially enjoy has nothing whatsoever to do with my own determination to succeed.

No young chronically ill person should ever go through what I went through, or feel like they’re not enough – which is precisely why campaign strategies such as these need to be handled and safeguarded so carefully. There must never be a situation where somebody vulnerable is forced into physical activity against their will or better judgement.

I wish the campaign well. Despite everything, I really do hope it improves the quality of life of those who are willing and able to engage with it. However, it’s vital that individual voices remain central to the process. I’ve learned that I’m not undefeatable and that that’s okay: my physical capabilities don’t define my worth, and that fact simply isn’t up for debate by the non-disabled public.

Pippa Stacey is a writer living with ME/CFS. She blogs at lifeofpippa.co.uk, and you can follow her on Twitter at @lifeofpippa_

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