When it isn’t All in Your Head…

First written by FTWW for Mindarium Magazine, September 2017

Those of us with chronic illness have long been aware of the link between it and mental health problems – whether they be depression at the loss of our former, pain-free, lives – or anxiety over how to cope with the inevitable change in circumstances. In fact, there is now a growing body of evidence supporting this link and looking at ways to help sufferers and carers manage these co-existing conditions more effectively. It is, quite rightly, perceived as essential that physicians fully appreciate the risks of chronically ill patients developing mental health problems, the impact these can have on well-being, and be able to recognise and treat accordingly.

But what if it’s a patient’s encounters with healthcare services, and the medical profession itself, which are compounding – even initiating – the onset of mental health issues? Certainly, here at Fair Treatment for the Women of Wales we hear countless stories from our members regarding their growing anxiety around visiting the GP, and depression at not being believed. The longer it goes on, the more entrenched these feelings become – and, before you know it, there is a full-blown psychiatric condition with which to contend as well as those physical problems which underpinned the patient’s original visits to the doctor.

Let’s give some context here: FTWW is a small but growing, user-led, third-sector organisation dealing with women’s health inequality across Wales. When we tell people what we do, we often get asked why we don’t represent men too – don’t they similarly suffer unfair treatment at the hands of an NHS system in Wales which doesn’t routinely allow patients to access gold-standard specialist treatment out of area? Of course they do – and nobody is denying that they may well also need representation. However, as a patient-led organisation, we have to ‘go with what we know’, and what we know is that girls and women frequently suffer at the hands of a culture which is beset with taboos around gynaecology, which normalises pelvic pain, and which tends to dismiss their symptoms as being signs of ‘over-sensitivity’, stress, or being ‘melodramatic’.

Drama Queen: The perception of gynaecological issues is beset with historical bias

Even the word ‘hysteria’ has its roots in the Greek hystera meaning ‘uterus’, leading to the assumption that only women could be hysterical – victims of their ‘angry, wandering wombs’. This mythology continues to permeate contemporary society at every level and, unfortunately, the medical profession is no exception. Whilst nobody is accusing doctors – male or female – of being deliberately sexist in their outlook (although there may well be a few who are, just as with anyone else) there is undoubtedly some element of unconscious bias which is clearly reflected in the experiences of our members, time and time again.

Our initial focus as an organisation was endometriosis, a gynaecological condition where tissue similar to the lining of the uterus is found elsewhere in the body, causing localised inflammation, bleeding, scarring, pain, organ dysfunction, and infertility. It affects one in ten girls / women, is as prevalent as diabetes or asthma and takes, on average, up to ten years to diagnose. During that time, patients will visit their GP tens of times about their symptoms, begging for relief. Because it is hormone-mediated (although symptoms can persist month-long) they are repeatedly told that it is ‘normal’ to experience debilitating pain during their periods, that their bowel problems can be attributed to stress-related irritable bowel syndrome, that the extreme suffering they describe is probably ‘all in their heads’, and that an anti-depressant will soothe their obviously jangling nerves.

And, indeed, eventually, over time, those oft-proffered anti-depressants may well help – by somewhat reducing the fear of visiting the GP or A&E yet again, to be sent away with no proper investigations done and a relatively useless prescription for paracetamol. They help to numb the ever-escalating and all-encompassing feelings of self-doubt. What they don’t do is tackle the physical symptoms which started this whole, horrible, cycle – a cycle which costs our economy dear in terms of worsening prognoses for patients, their resultant loss of productivity, and the financial burden of meeting escalating healthcare needs. A problem we first noted in the suffering of women with endometriosis we are increasingly seeing in women with all manner of health conditions.

Chicken or egg: do anti-depressants treat women’s physical symptoms or just the gaslighting that comes with associated disbelief?

The solution seems simple and is one around which FTWW’s campaigning centres: education; education which starts in school but extends to our training of medical professionals.

We need to have more open, honest conversations about menstrual health and stop pretending that the ‘private parts’ of 51% of the population are too private to discuss, that they don’t exist because they’re tucked away inside our bodies, a dirty secret.

Let’s get real about women’s bodies by having open, honest, accurate conversations

We need to recognise that, actually, pelvic pain which causes young women to repeatedly miss out on their school and social lives isn’t ‘normal’, and start talking about it.

We need to educate student doctors in the art of really listening to patients (whatever their gender) so that years of unnecessary physical and mental suffering are avoided. We need to ensure that the continuing professional development of medics mandatorily involves patients, thereby ameliorating those paternalistic attitudes which prevent us challenging misdiagnoses.

We need those same medics to appreciate the potentially devastating effect their words can have on patients’ quality of life, and that if they commonly – and repeatedly – attribute physical symptoms to a spurious mental health issue then that’s what friends, family, employers do too. Is it any wonder that, for those patients, genuine psychiatric conditions develop, thereby ensuring that the initial (mis)diagnosis becomes a self-fulfilling prophecy?

Let’s nip this in the bud NOW. Let’s start by acknowledging that there’s a problem and that it isn’t ‘all in our heads’.