Dr Rageshri Dhairyawan feared it might be ovarian torsion. The signs aligned: the patient was in the middle of a cycle of IVF, and a complication of the hormonal injections can be that the ovaries swell and twist, cutting off the blood supply. Ovarian torsions also cause severe pain, which checked with this patient’s experience: she had been found on the bathroom floor, withering in agony, before her husband had driven her to hospital.
As a senior doctor in the NHS, and a consultant specialising in sexual health and HIV medicine, Dr Dhairyawan had a lot of experience of dealing with patients in pain. The only difference was, this time, the patient was her – and she wasn’t in control of the pathway through the hospital. Instead, Dr Dhairyawan was now in the hands of the service she worked for. And as she reflects in Unheard: The Medical Practise of Silencing, it was an experience that left her “humiliated”.
“My medical team attributed my symptoms to ‘just’ a flare-up of endometriosis from the IVF hormones,” she writes. In reality, it was far more serious. Though Dr Dhairyawan wasn’t suffering from ovarian torsion, her IVF cycle had failed. In the process, she experienced first-hand what it is like to have your pain dismissed when you are suffering. “I had been treated as though I was an unreliable narrator, an attention-seeker, someone trying to get strong opioids through dishonest means,” she recalls. “It was not the care I expected or deserved.”
It is well documented that this is an experience which many women – especially women of colour – face in healthcare. It takes an average of eight years and 10 months to receive an endometriosis diagnosis, with women having to visit their GP 10 or more times before they get answers about their symptoms. Meanwhile, in May, the Birth Trauma Inquiry published a report that showed one in 20 women receive such poor care during childbirth that they develop PTSD, and other studies have shown Black women in the UK are four times more likely to die in pregnancy and childbirth than white women.
In Unheard, Dr Dhairyawan laments the problems that lead to this, such as how a lack of research in minorities means their health is often misunderstood, as in the case of sickle cell disease, or that pain is seen as “an integral part of being a woman”. And how overworked, underpaid doctors “is a patient safety issue”: “When doctors experience compassion fatigue or burnout, they are less able to treat patients with empathy and to fully hear them.”
Yet Dr Dhairyawan is also able to criticise the system and doctors in a way that patients may not feel comfortable to, given our awkward gratitude for the NHS. She offers unique insight into how doctors are instilled with a sense of hubris from the beginning of training; emboldened with a sense of status “separate to, and we believed slightly superior to, other university students”. Meanwhile, she writes, they were taught to keep a distance from patients, “to listen selectively and with a degree of scepticism”.
Despite the fact it is often charities and communities who are left responsible for awareness and fundraising, she is strong on her stance that it is not the job of those receiving poor care to improve how things are done. Instead, this book is a call for change within medical policy and education systems – highlighting the problem with doctors being taught to treat illnesses, not people. “The healthcare systems we work in are designed in a way that actively discourages listening,” she writes. “Doctors and patients lose some of their humanity in these conditions, leaving both feeling unheard.”
There is comfort, rage and hope to be found across the sprawling stories of Unheard. In particular, anyone who has found themselves disbelieved by doctors will turn its pages with relief that there are people like Dr Dhairyawa: professionals who both hold their hands up to mistakes and care enough to demand that “the silencing – that active and reinforced void which should never have become a medical practice – is filled with human connection”.
Published by Trapeze, £22