Book review: Pain and Prejudice - chronic illness, pain and its disproportionate impacts on women

Pain and Prejudice is a book about the structural prejudice that the health system displays towards women’s pain. It’s a memoir about having endometriosis and a powerful history of how medicine has treated women through the ages, and failed to take women’s pain seriously, with often dire outcomes.

Gabrielle Jackson takes care not to pin the blame on medical professionals but on the structures that underpin society and health. Still, it’s hard not to cringe (at best) or rage at the scenarios and statistics that Jackson sets out in her book, and that play out in hospital emergency rooms and in GP rooms every day. For one example, take heart disease.

Patient A, a man, is suffering from chest pain and shortness of breath. He goes to the ER, is seen straight away, and treated for a heart attack.

Patient B, a woman, is suffering from chest pain and shortness of breath. She goes to the ER and is sent home with anxiety. She’s twice as likely to die, 6 months after discharge (Jackson, 2019, p. 7).

Why?

Mice and men

 Part of it comes down to women and men having different health symptoms and displaying them differently. It also comes down to clinical bias where most clinical trails are conducted on male mice or men, and treatments therefore don’t work as well on women because of our differing biological make-up.

  “70% of chronic pain patients are women, but 80% of pain studies are conducted on men or male mice” (Kiesel, as cited in Jackson, 2019).

 At its heart, this is a book about chronic illness and chronic pain. Those illnesses that affect women in far greater numbers than men, like endometriosis, lupus, fibromyalgia, chronic fatigue syndrome (and you’ll know of many others) may affect women more because of our genetics and our immune systems. We live longer than men and our immune systems are powerful because of that, but perhaps too powerful, and often turn on us. Pain is a frequent symptom of these conditions.

A Dutch study on pain in children found that between the ages of 8-11, more than double the number of girls than boys experience pain, and the ratio climbs with age (Christel Perquin, as cited in Jackson, 2019).

The discrepancies come down to funding, too. For every 100 million people with cancer, $5392 million is spent on research, for every 100 million people with chronic pain, only $402 million is spent (NIH, 2014). Pain can’t be seen. It’s invisible, and it’s misunderstood.

The nature of pain

This is the really fascinating bit of the book. There’s so little we know about ongoing long-term pain, as opposed to acute, episodic pain. The health system struggles to deal with patients who present over and over again with the same problems and there aren’t effective clinical pathways to deal with their pain.

If a person experiences pain repeatedly, their body can develop a syndrome where pain becomes a chronic illness in itself. So even when the physical disease is dealt with or removed, people can still experience ongoing pain. We see this with endometriosis, where women undergo surgery to remove endometriosis lesions (cells) that grow outside of the uterus (they’re meant to be inside the uterus but find their way into other organs and inside the pelvic cavity, and cause inflammation). I’ve had laparoscopic surgery for endo myself, but still experience ongoing pain. As endo patients, we’re rarely given other options other than surgery, so people can have repeated surgeries that can make their pain and problems worse, rather than other treatments like effective painkillers or physiotherapy. I didn’t even know other painkiller options existed outside of paracetamol, ibuprofen and codeine, but Jackson talks about many others that have been effective for her.

Pain signals

With endometriosis, pain can send a signal up the spinal cord into the brain, and signals into the muscles in the pelvis to tighten. Inflamed endometriosis lesions also send signals up the spinal cord and into the muscles. All of these signals sensitise the nerve pathways. Over time, everything becomes more sensitive. So in this way, endometriosis and other chronic illnesses can become pain syndromes. Symptoms may not be the result of the physical disease itself but the result of sensitisation. This has huge implications for the treatments doctors give their patients and what clinical pathways they use, but sadly, pain and pain syndromes are under-researched.

Learn and listen

There’s one solution that Jackson puts forward, that unlike research, doesn’t cost millions of dollars. Medical professionals simply having the ability to listen to their patients with humility.

“Doctors need to learn they don’t have all the answers, and they need the skills to deal with patients whose symptoms they may not be able to treat very well. They need to listen to, and believe, their patients. As rates of chronic illness continue to grow across the world, this problem won’t fix itself.” 

So there’s my summary of Pain and Prejudice. It’s an important read– in my opinion, a must-read– if you’re a woman and have issues with pain or chronic illness.