Yesterday Vogue published an essay by Lena Dunham describing her 10-year battle with endometriosis that led to a full hysterectomy at age 31. In vivid detail she describes what it feels like to live with chronic pain and its heavy emotional and physical toll. It would be hard for anyone to not feel the deepest sympathy for what she’s gone through. Yet most people won’t have previously heard of the condition, nor recognise the toll it can take.
Conditions such as endometriosis are woefully misunderstood. Stories of women suffering with agonising pain for years before receiving a diagnosis are commonplace, with the blinding pain being dismissed as ‘normal’, or that the women need to ‘toughen up’. This ignorance and lack of understanding is the reality faced by the thousands upon thousands of people who are living with ‘invisible’ illnesses.
Endometriosis, chronic fatigue, hypermobility, ME, fibromyalgia, arthritis. These sorts of conditions will change your life. But as a society, we aren’t seeing them or the pain they cause.
It’s estimated that up to half of adults in the UK may be living with chronic pain in some form. That’s over 30 million people; a staggering number. Yet it’s not something we talk about. When did society decide to remove chronic pain from the health conversation?
I’m very fortunate not to suffer with Lena’s condition but her experiences strike a chord. So many times in the past I just wanted to wave a magic wand that would take my chronic pain away. I have a condition called hypermobility. Those who live with it experience symptoms that can run the gamut from extreme tiredness and digestive problems, to joint pain and dislocation. Imagine going about simple tasks and not knowing if your bones will stay in their sockets whilst you do them! It’s a reality people with hypermobility and related conditions such as Ehlers-Danos Syndrome sufferers face constantly. This condition too is extremely common, yet many people go undiagnosed for years due to lack of awareness about the symptoms and impacts.
We’re getting better at talking about and understanding mental illness but we desperately need to speak about the physical conditions we can’t see too. We’re a very visual culture and often fall into the trap of thinking that if we don’t see something, then it can’t exist. Educating ourselves about the conditions affecting the person sitting next to us is an important step. As is not minimising them, in the same way as mental illness.
For sufferers, it’s about not being ashamed and hiding away. If you have the energy to have conversations and invest that emotional labour then that’s amazing. The advantage of our visual society is that the more we make ourselves visible, from celebrities like Lena right down to you and I, the greater the community and care we generate. Putting a face to an NHS information page is so important in showing the day-to-day reality of chronic pain and other invisible illnesses.
But you won’t be failing in any way if you can’t. We’ve just had Valentine’s Day and as cheesy as it sounds, it’s vital to prioritise self-love and self-care. Learning to love your body in all its frustrating, imperfect totality – a body living with conditions which society refuses to see – is the hardest but most rewarding journey we can embark on. I’ve found that movement is what literally propels me forwards. Exercise that relieves tension and explores, without pushing, my body’s capability has truly connected me to myself.
Chronic pain shouldn’t be something we hide from others or hide from ourselves. Acknowledging its existence is the first step in learning to manage its impact. 2018 can be the year we start seeing chronic pain and invisible illnesses and giving it the attention it deserves.