Audre Lorde said in the 2004 collection Conversations with Audre Lorde: ‘Pain is important: how we evade it, how we succumb to it, how we deal with it, how we transcend it.’
Medical professionals and scientists have recently made a series of breakthroughs in the study of what is now known as chronic pain. Doctors define chronic pain as pain that has afflicted the sufferer for more than three months.
My own abdominal pain began in November 2009. That means for about eleven years, it has technically been chronic—rather than acute—pain.
Acute pain is the feeling that our culture usually associates with suffering. Acute pain is temporary. It is a broken ankle, a sports injury, a sore throat. It is a distress signal sent from a part of the body that is damaged up through the nerves along the spine and into the brain. When the physical problem is healed, the pain subsides. This is how we still, far too often, define and describe pain. For many people who live in pain, this narrative is achingly inaccurate.
When there is physical damage to a tissue or organ and the nerves receive these pain signals, the purpose is for us to act on them. Rest. Ice the injured ankle. Seek medical care.
But when those pain signals are sent and we do nothing, the nervous system becomes confused. It sends double the number of pain messages, then triple. Before long it is sending ten times as many pain signals to the brain, for the very simple reason that the regular amount is not having the desired effect; it is not keeping us safe. When we are ignored, we speak louder.
This is why many chronic conditions can have peaks and troughs in terms of the amount of pain the sufferer experiences. The body will cycle through routines of sending an inappropriate amount of pain messages to the brain just to get the brain to take notice. The body knows something is wrong, but the brain has learned that women are expected to cope with pain. As always, I have now learned, the body wins out in the end.
If we are experiencing acute pain but it is not healed, the nervous system will become overactive and send too many pain messages. But if that doesn’t work, the neuroplastic brain actually creates a new neural pathway that is a constant pain feedback loop—it will mimic being in pain almost all of the time as a precautionary measure, because it cannot trust its normal alarm system to get us to act. So the pain becomes chronic—it exists in the brain as a constant warning sign, even when the actual tissue damage is healed.
Once pain is chronic—and this is the part that doctors are only just beginning to understand—it is not a symptom. It is its own disease. It is a neurological malfunction in its own right. It is not caused by a separate injury but is an injury to the brain in itself. This makes it almost impossible to tackle.
Once pain is chronic—and this is the part that doctors are only just beginning to understand—it is not a symptom. It is its own disease.
So here’s the kicker: ignoring women’s pain not only inhibits the process of healing, it actually makes it more likely that the pain will become permanent. Does that make you angry? It makes me angry.
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Women are 25 per cent less likely to be given opioids when they present to an emergency department with acute pain, as cited in ‘Gender Disparity in Analgesic Treatment of Emergency Department Patients with Acute Abdominal Pain’, a study published in the peer-reviewed journal Academic Emergency Medicine. When they are given painkillers, they are given a lower dose than men reporting the same degree of pain.
Women in pain wait an average of sixteen minutes longer than men to be seen by a doctor, according to the New York Times piece ‘When Doctors Downplay Women’s Health Concerns’. When women go to a doctor with a painful condition, the pain is much more likely to be dismissed as psychosomatic or just a part of ordinary life.
This is one of the reasons why it takes an average of seven to ten years for a woman with endometriosis to be diagnosed and treated.
Elaine Scarry wrote in her book The Body in Pain: ‘To be in pain is to have certainty. To hear that another person has pain is to have doubt.’
No one knows the feeling of being doubted better than a woman does.
The actual function of acute pain is not to torment us but to alert us to danger, Norman Doidge writes in his 2018 book The Brain’s Way of Healing. With chronic pain, however, the alarm system has stopped working because the person responding to it has continued to override its messages, to insist that they do not deserve the attention it is demanding, to question the legitimacy of their own bodies. Is it any surprise, then, that so many patients of chronic pain are women?
As this pandemic rages while I write, I am thinking a lot about the language we use to talk about illness and pain. It is always a language of combat, of war. It is militaristic and individualistic and heavy with moral weight: those who survive pain and illness are ‘fighters’, endowed with some mystic property that entitles them to ongoing life. This language is not only masculine in its own right—in its violence—but also in the sense that it only imagines a definition of pain and illness that is acute and inherently temporary. The ‘battle’ is won, or it is lost. Either way, it ends. At some point, the fight is over.
As this pandemic rages while I write, I am thinking a lot about the language we use to talk about illness and pain. It is always a language of combat, of war.
Not so for too many women. Not only are women much more likely to develop chronic pain conditions resulting from acute pain, but many of the hitherto untreatable chronic illnesses we contend with either primarily or exclusively affect women. For women, pain is not valiant and fleeting.
It strikes me that my illness was the end of a battle, not the beginning. I suffer deeply from my physical disability every day, of course. I’m not saying I don’t struggle with it. I do. But not in the way that the word ‘battle’ evokes. That all came before. The battle was the lie: it was waking up every day and pretending I was something other than I was, pretending I hadn’t been hurt by the world. When I got sick, that was my body giving up on the lie. Illness was the most honest state in which I’d ever existed. In this way, it wasn’t a battle at all. It was a relief.
As Frances, the protagonist in Sally Rooney’s novel Conversations with Friends, says about her chronic illness:
I realized my life would be full of mundane physical suffering, and that there was nothing special about it. Suffering wouldn’t make me special, and pretending not to suffer wouldn’t make me special. Talking about it, or even writing about it, would not transform the suffering into something useful.
Pain that does not end is not a high-energy battle or a fight to the death. It is the most boring, mundane experience on Earth. It is simultaneously traumatic and dull. Something that should be extraordinary but, because of our lot, has become so very ordinary for women.
Everything about pain and illness that disadvantages women is even more debilitating for Black people, particularly Black women, and many racial minorities. Black women are significantly more likely to develop chronic illnesses than white women, according to a 2018 study by the University of California Berkeley, ‘Racial Discrimination Linked to Higher Risk of Chronic Illness in African American Women’.
For too long we have made the mistake of believing that illness is caused by personal behaviour. After living through my own illness, and talking to so many people for this book, I’m convinced that this connection is imaginary. Illness is structural. The body breaks down under the stress of structural oppression. As Sinéad Gleeson writes in Constellations, ‘the kingdom of the sick is not a democracy.’
This is an extract from My Body Keeps Your Secrets by Lucia Osborne-Crowley (Allen & Unwin), available now at your local independent bookseller.
