It is devastating how almost every female patient I have met along the way has at some point been told ‘it’s all in your head’.
Over the last 20 years I have become the expert no one wants to be; the expert patient. Along the way I have become highly qualified in two things; being a patient and being very patient. Sadly, in my encounters with medics I have experienced my fair share of medical misogyny.
Here are my Top Tips on dealing with medical misogyny, something that you should never have to deal with and that I am campaigning to change.
Question the logic
When healthcare professionals dismiss or minimise your informed concerns about your health, it can make you doubt your own reality. This is known as ‘medical gaslighting’ and it is never ok.
Sometimes in these scenarios, showing can be more powerful than telling. Document any visible symptoms with photos and videos.
In 2022, I found myself in a London hospital, with horrific symptoms affecting multiple systems in my body. Day one, doctors were crying at my bedside but by day 60, when no physical diagnosis had been reached, there was a shift to it ‘must be psychological’. I will never forget the doctor who came to my bedside and started referring to my ‘perceived’ symptoms. The only thing I could do was question the logic.
‘I’m saying my head is agony and you can see two swellings on it. I’m saying my abdomen is locking and you can see I look pregnant. I’m saying my feet are burning and you can see pustules erupting through the skin. How can my symptoms be ‘perceived’ when they are so overtly visible?’ (Be Patient)
If something doesn’t feel right, question it. You never have to rely on what just one doctor says; medicine is about opinion. You can always seek a second opinion.
It’s time to find your voice.
Knowledge is Power
“Yes, ok mum,” I have patronisingly heard medics say to my own mum when she has questioned them or attempted to put her research forward.
She’s not your mum. She has a name.
During my most recent admission in hospital for a condition predominantly affecting young women, I met so many other mums who had spent a lifetime battling for their daughters; they battled to be believed, battled for a diagnosis and battled for treatment.
These mums made solving their daughters’ medical mysteries their life purpose but these mums and so many more are battling against a global healthcare system that so often would rather not listen to ‘mum’.
They learnt that only with relentless research could they challenge the medics’ thinking.
This meant when they were told: ‘That doesn’t happen,’, “There are no more tests,” “Perhaps this is psychological,” they could challenge these statements, with the medical knowledge to back up what they were saying. They weren’t just using generic phrases like ‘my daughter is very ill’, they were armed with the scientific evidence to pose specific questions, preventing them from being dismissed.
‘Aged 17 my mum was forced to leave school and live alone. Over the last 20 years, I’ve watched her go on to engage with top medical professionals on everything from multi-drug resistant bacteria, to cytochrome P450… her relentless research and unwavering belief has shown me what can be achieved if you choose to see possibilities rather than obstacles.’ (Be Patient).
These mums are proof that knowledge really is power.
The power of 'WE'
I never blame doctors for not having the answers. Over the years, my case has been highly complex but when they hit a road-block, I would so much rather they said:
“I’m really sorry Tilly, we’re struggling to find the cause at the moment but we will try to help you with the symptoms in the meantime.”
Often without a ‘label’ I have been offered no help with managing symptoms, as there is no clear pathway and instead, they pass me on like a hot potato, with no one taking ownership of my case. The other scenario I’ve found myself in, is a shift to ‘it’s all in your head’. Of course, this should never happen in the first place and I am making it my mission to change the trajectory. Sadly, I am inundated with messages from women on my Instagram @thatillyrose proving that the status quo right now is that this is happening.
The best way I have found to prevent this scenario from arising is channelling the power of ‘WE’. Rather than it feeling like a battle of you against the doctor, try to see what happens if you change your language to incorporate ‘we’:
“How could we try to work this out together’?’
‘What could we do to move this situation forward?’
‘Are there any more tests we could arrange?’
‘Thank you so much for working with me to try to solve this.’
‘We’ instantly turns you into a team; it shifts the power dynamic and creates a scenario where you are working together with a shared goal. During one long admission, where no one could solve the cause of my symptoms, a doctor, who I later coined ‘Maverick’ worked with my family and me as a team. The first time he visited my bedside he said:
‘You’re no doubt an expert in these attacks, Tilly – can you describe them to me?’
‘Family often notice things the doctors may not have picked up on.’
He showed what could be achieved when patients and medics work as a team. This really is the winning combination.
Read more patient survival tips in ‘Be Patient’, Tilly’s extraordinary memoir of resilience, hope and finding strength in the face of adversity. Available to order now.
Follow @thattillyrose on Instagram where she shares ‘chapters’ on the daily reality of life as a patient.