It's all in your head: Medical Gaslighting

In continuation of our blog series exploring the tumultuous, nuanced and ever-changing world of women’s health, Kate Baker from Incite delves into the subject of Medical Gaslighting, sharing her own story as well as the research and data gaps which are contributing to this issue.

Pharma and healthcare companies have long recognised the need to be more patient-centric in order to tackle issues such as Medical Gaslighting, but what does this really look like in practice? Join our webinar on 22nd November to hear more on this topic.

But first, what is Medical Gaslighting? ?

Medical Gaslighting is the term that describes a behaviour in which a doctor or other medical professional dismisses or downplays a patient’s symptoms or attributes them to something else, such as a psychological condition.

We are exploring this topic within the blog series as Medical Gaslighting is especially likely to happen to women and has a multitude of negative consequences on their care and health.? ?

Learn to spot the signs: Five clues you’re not being heard.??

1. Your complaints are dismissed as stress, anxiety, or depression—and your doctor or medical practitioner is uninterested in investigating further.??
2. You feel ignored or not taken seriously, or that they’re pushing their expertise to prove you wrong.??
3. Your intuition tells you something is off, even when your doctor tells you it’s all fine.??
4. You feel talked down to or minimized, instead of engaged in a two-way conversation.??
5. Your HCP isn’t willing to run more tests for you—and won’t adequately explain why you don’t need them.?

Why does it happen??

The medical field hasn’t always been centred on the patient experience—especially when it comes to women, people of colour, and trans and intersex individuals.??

Up until fairly recently, a lot of research and therefore health systems were based on white, cisgender, straight, able-bodied men - so that was a gold standard for how to recognise, diagnose and treat illness.?

Stemming from this fact that medicine and healthcare have historically been designed for men, Caroline Criado Perez, author of Invisible Women explains “Healthcare is systematically discriminating against women, leaving them chronically misunderstood, mistreated and misdiagnosed”. Ingrained biases result in medical gaslighting as one way in which women are being failed by the healthcare system.?

In this piece Kate shares her own personal experience and we ask what more we can do as those in the field of health and pharma research to address this ongoing battle, in order to provide better outcomes for women.?

“It's probably just bad period pain”?

I was recommended to stop taking the contraceptive pill in my early 30s, to 'give my body a break' (however there is actually no evidence to suggest your body needs a break). About a year or so later, I started experiencing the worst stomach pain I had ever had. It would make me double over; I’d have to cling on to something to keep me upright, something to hold on to, to keep me grounded during the waves. It was around the time of my periods, but also could occur outside of that.?

It wasn’t like period pain; it was like no pain I had ever felt before. One month, I was working at home, and I started experiencing the pain again; it was so bad that I called my partner at the time to come home as I was scared. I called the doctor to see if I could get an appointment.??

The doctor, who was seeing me via the NHS, occupied a room in the surgery which was like no other doctor’s room I’d seen. It was full of beautiful and clearly very expensive furniture and art, completely at odds with the rest of the surgery. When I commented on it, he waved a hand at the walls and said, “the private work pays for this.”?

Anyway, after a few cursory questions and checking that I wasn’t pregnant (despite my insistence that I couldn’t be), the doctor said it was probably just bad period pain and gave me a prescription for a large number of Tramadol (a strong and potentially addictive opioid painkiller, used to treat moderate to severe pain, for example after an operation or a serious injury).??

I was dismissed without any real attempt or interest in finding out what was wrong; instead, I was sent off with enough pain medicine to fell a herd of elephants. I was none the wiser as to what was causing the pain, and just took the drugs when the pain was too much.??

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“They tell me to go to A&E immediately”

Fast forward another year or so, and I’m at work. The pain has been coming on in waves all day, and it reaches its peak. I leave work, as I can barely stand, and get a cab to my Mum’s, as I was going there for dinner anyway. My mother can clearly see something is wrong and urges me to call 111. Eventually I give in and do so. They tell me to go to A&E immediately.??

On arrival, my blood pressure is very high and I am admitted. After being examined by a number of people and having various tests done, I am diagnosed with appendicitis and ‘reverse menstruation’. I am told this by a very nice older male doctor. As nice as he was, he didn’t explain anything about what that meant, just said it quietly with a smile and left, followed by a number of medical students.?

I then have an internal ultrasound, by technicians who didn’t explain what was going to happen and then who ignored me when I started crying out of pain and fear; they kept muttering words like ‘haemorrhage’. They then stopped, went to get a more senior person, and did it all over again. Afterwards I was wheeled out of the ultrasound room and was left in a corridor, sobbing. A kind nurse spotted me and moved me to a quieter spot and gave me a drink.??

The next day I have surgery to remove my appendix and at the same time, remove what I find out to be endometriosis tissue. I wasn’t told much information about what they done, and no one thought to explain what it was or what it might mean for me.??

Once I’d recovered from the operation, I independently read up about endometriosis, and made lifestyle and dietary changes to help me manage it. I was later referred to the specialist gynaecological outpatients service at St Marys hospital, where I have been treated with the utmost care, patience and respect.??

On average it takes 8 years from onset of symptoms to get a diagnosis of endometriosis.?

Had I not got appendicitis at the same time as experiencing the pain, I shudder to think how long my endometriosis would have gone undiagnosed for, and the long-term effects it would have had on me, physically and mentally.??

The tip of the iceberg

Endometriosis is one of the most under-researched, misunderstood and under-diagnosed conditions, yet is one of the most painful and debilitating. Due to this lack of understanding it alarmingly commonly mis-diagnosed and lumped into the category of “period pain”.??

According to research from Endometriosis UK, three in four women wouldn't go to the doctor with endometriosis symptoms that were affecting their daily life due to worry that their symptoms would be dismissed.?

Helen McLaughlin, 38, is a support group leader for Endometriosis UK and told Sky News many women with the condition are subject to Medical Gaslighting. When asked what women get told when they present with symptoms, she rattles off a list: "It’s IBS; you’re overreacting; it’s all in your head; all women have heavy periods; 'just get pregnant - it’ll cure you'."?

Endometriosis is just one of many health conditions where women’s symptoms are ignored, dismissed or downplayed.

Other examples effecting women include:?

• Statistically women are more likely to receive mental health diagnosis when they have heart disease vs men.
• Women also have a 50% higher chance of receiving the wrong initial diagnosis after a heart attack which means they are less likely than men to promptly receive the life-saving treatments they need.???
• When it comes to cancer care, women are twice as likely as men to report symptoms five or more times before they’re diagnosed.
• Millions of women and girls experience "debilitating periods" but more than half say their symptoms are not taken seriously.

What are the research and data gaps?

Within the UK Government’s Women’s Health survey results, there was a consensus among respondents that more must be done to improve research, evidence and data on women’s health.??

Their main suggestions, which would be enhanced by ensuring diversity and support for women in research career pathways, were to:?

• Ensure women, and women with different protected characteristics, are represented in clinical trials and studies?
• Initiate further research into health issues specific to women, such as endometriosis and the menopause, and health issues that may impact women differently, such as autism and cardiovascular disease
• Better translate research data and evidence into practice, policy, and the public domain?

Other research opportunities, following on from the insights generated through this survey, include:?

• Evaluating models of health service delivery that better listen to and serve women’s health needs?
• Optimising the provision of information and education to women and professionals on women’s health issues to improve health outcomes
• Developing interventions to improve health in the workplace, including access to appropriate occupational health services and policies
• Understanding other determinants of women’s experiences in the healthcare system, such as their socioeconomic background (which was not captured through this survey), or the characteristics of healthcare professionals themselves?

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I think we can all agree that medical gaslighting leaves an indelible mark on the wellbeing of women, fostering an environment where their concerns and experiences are often dismissed or undermined within the healthcare system. The consequences extend far beyond the HCP's office, impacting women’s lives and impeding their ability to access appropriate care, sometimes with fatal results.??

It is imperative for us as healthcare researchers and HCPs alongside society to acknowledge and address the systemic nature of Medical Gaslighting, and work towards a culture of empathy, validation, and patient-centred care.??

Only through collective awareness and advocacy can we hope to ensure that women receive the respect, validation, and medical treatment they rightfully deserve.?

What are the statistics?

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