I was standing in a dumpster in my Bafta awards ball gown, Lady Gaga’s perfume still clinging to my cheek, when I realised: “People really have the wrong ideas about my life.”
The reality of life with any kind of “invisible” disability, chronic illness or chronic pain is that it is by nature hidden. Working in theatre and screen, which are not known for being especially pro-disability, I’ve always taken for granted that my clutch of complicated medical woes needed to be kept, if not secret, then certainly private. Yet it was starting a new career in theatre after a life in academia (via work with disabled theatre companies such as Graeae and Unlimited) that radicalised me into disability activism, and empowered me to come out publicly as disabled. But I rarely talk about my own conditions or the impact they have on my daily life.
The social model of disability (the prevailing model used today) holds that disabled people are not disabled by our own bodies but by an ableist society, and the access barriers the world puts up; that there is “nothing wrong with us”, we simply need to be allowed to exist within a more inclusive world. The social model has been incredibly important for helping disabled people reframe how they view their own bodies, and in holding an ableist society accountable for the serious lack of access in the UK and elsewhere.
But chronic illness sometimes fits uneasily within this. Disability is a huge spectrum and no single model will ever fit everyone. After years of being told I’m imagining my pain, to now be told by other disabled activists that it’s ableist to want to be cured feels eerily similar. The chronically ill for sure are hindered by ablenormative society (my kingdom for more public benches!), but there is no accessible accommodation in the world that will stop me from being in pain or let me do the things I want to do.
I can’t count how many times I’ve had to leave rehearsals, press nights, even holidays, claiming early trains or late meetings. I play the “oh so busy, much in demand hot playwright juggling so many different projects” card, but when I do, I’m probably lying and need to go home to nap, or just lie down because I’m in so much pain I can’t think straight. Sometimes I’m not sure why – fear of not being believed, being seen as weak, of bucking theatre’s “the show must go on no matter what” mentality? Sometimes I just don’t have the energy for the inevitable intrusive questions that being honest about chronic illness tends to invite. Being allowed to work shorter hours is a crucial access accommodation in and of itself, but I really wish my doctors would just find a cure.
I call it the chronic illness tax. Others call it the spoon theory, a term coined by activist Christine Miserandino as a way of conceptualising how chronic illness and chronic pain limits how much energy you have to spend on everyday activity. Say each person has 50 spoons, and it takes one spoon to shower, one to wash your hair, two to make breakfast, etc. If you have a chronic illness you might only have 10 spoons, and have to decide daily what precious activities to allot each spoon to. How do you prioritise?
Because it’s not just “being tired”. In a world that applauds busyness, that assumes bodies are servants to will, rest is radical. Women especially are expected to just keep going, to be the reliable bedrock of both the workplace and the home, and to negate our own needs. But the cost of running out of spoons is high: serious relapse resulting in weeks or months bedridden, hospitalisation, brain fog, or just pain.
Which brings us back to Lady Gaga, who has spoken about her own battles with fibromyalgia and “waking up every day not knowing how you’re going to feel”. I was invited to attend last year’s Bafta awards, a surreal career highlight. Coming out of the loo I walked straight into Gaga, who saw a fellow crip and decided hugs were in order. It felt a bit like walking into a unicorn. Her music kept me going through so many bedridden weeks and months, but I didn’t need to tell her. She knows what she means to us, because she is us.
I floated home … Actually, that’s a lie. I was happy, but the Baftas require that you arrive hours early, the ceremony is long and my body just can’t hack that. I skipped the afterparties and limped home to go lie down, but before I could crawl into bed and scroll the endless parade of afterparty pics, I had to put the bins out.
That’s when it happened: fatigue and brain fog meant I forgot that my keys were in my hand and I watched them parabola through the air and land at the bottom of my building’s bin store recycling dumpster. There was no alternative but to climb in, using discarded crates to form a ladder. Then someone else came along, and, well I panicked, and ducked down. Fortunately whatever neighbour was also throwing their recycling away at 11pm chose a different dumpster, because how on earth do you explain the degree of brain fog or pain-induced utter stupidity that results in you crouched inside a dumpster, wearing a ballgown, babbling about Lady Gaga and illness and pain, pain – sublime all-encompassing pain?
The gender pain gap is a phenomenon in which women’s pain is taken less seriously, and more frequently misdiagnosed and undertreated compared with men’s – with one in two women believing that their pain is dismissed or ignored because of their gender. If you want to learn more about the Gender Pain Gap and read the full Gender Pain Gap Index Report commissioned by Nurofen, visit nurofen.co.uk/see-my-pain
Nurofen 200mg Tablet for short-term, mild to moderate pain. Contains ibuprofen. Always read the label. RKT-M-24782.
