Chronically Ill Women & Gender Bias

On International Women’s Day I wanted to take a moment to address some of the issues chronically ill women face on a daily basis. Very early in my chronic illness journey I learned that women are often seen as hypochondriacs. Time and time again I hear of of women being dismissed by medical professionals, their symptoms doubted. So is there a gender bias in medicine?

“It’s in your head”

It is well documented that gender can factor into how long it takes to get a diagnosis. There are many studies which show diagnosis takes longer on average if you are a woman. It isn’t that women are less inclined to seek medical help, these delays happen after they have already seen their first doctor*. My own experience supports the research that chronically ill women experience delays in diagnosis. The time between my first GP visit and diagnosis was 15 months. My GP was reluctant to run any tests. He finally requested some x-rays after I insisted the pain was really “that” bad. When they showed nothing he dismissed me entirely. His exact words were “sometimes knowing nothing is wrong helps”. In other words, he thought it was all in my head. That wasn’t the only time a medical professional dismissed my pain.

A doctor stands with his arms crossed holding a stethoscope. Only his chest can be seen.

Women are often told their symptoms are psychological; due to stress or depression. Prescribing anti depressants for physical pain is harmful. Chronically ill women can find their physical health suffers as a result of a delayed accurate diagnosis. It is a tale as old as time. Historically it was called Hysteria. Studies later found that women died as a result of having serious symptoms dismissed as Hysteria*. We may not call it Hysteria anymore, but the misdiagnosis of women due to this bias still happens on a regular basis.

Diagnosis for Chronically Ill Women

Autoimmune diseases like mine affect predominantly more women. Yet it takes an average of nearly five years (and five doctors) for women to get a diagnosis. It is not just autoimmune disease though. Women experiencing a heart attack or stroke are also less likely to be taken seriously*. The result of this means women die.

Women with pain seem to be taken less seriously than men. We are more likely to have serious, chronic pain dismissed as emotional or imaginary. There is also a shocking bias in medical research as well, with males being study more frequently than females*. If women are lacking in the research, then what hope do we have in practice?

A woman lies on an unmade bed, her face covered. She wears blue shorts and a long sleeved white top.

Something else important to touch on is that this gender bias is amplified if the woman experiencing symptoms or pain is a woman of colour. Women of colour experience an even greater bias than white women.

How is it in 2020 we are still seeing women as an after thought in medicine? And what, if anything, can we do about it?

What can we do?

I don’t have all the answers but I wanted to share a few of my own tips for being the best advocate for yourself.

Trust your instincts

I knew when my symptoms started that there was something ‘not right’. I knew when my GP dismissed it as in my head that he was wrong. It was important that I trusted myself, I knew my body and as a result I pushed back. I refused to be dismissed and kept fighting until I was heard.

Don’t give up

If one doctor doesn’t take you seriously, then request a second opinion. Request as many as it takes until you get some answers. Doctors are human and they aren’t always right. Find a doctor who listens, takes you seriously and isn’t put off by the fact pain is complicated. My Rheumatologist is absolutely incredible and he is male. Not all doctors will dismiss you!

Request letters

Something I learned early on in my chronic illness journey was to keep records. I always request a copy of letters from any appointments to ensure they accurately reflect what happened and so I have a record of it. Make notes of your appointments so you know what was discussed, when and with whom.

A red and black fountain pen lies on an open note pad. The word notes is written on the lined white page.

Keep a diary

Often initial appointments with a doctor can be short. A GP appointment is 10 minutes here in the UK. You need to make the most of that time and I find that having made some notes to take in can help. I also think having kept a note of symptoms over a period of time can help. If you’ve been experiencing pain for a few weeks, keep a diary of it. Note the severity of in the morning/afternoon/evening. Note if it’s worse or better with activities, after eating certain foods etc. All of this can be extremely useful information. That applies for symptoms that aren’t pain as well.

Don’t be put off my gender bias (or any other bias)

Finally, don’t let the fact that biases exist stop you from seeking medical help. Request to see a different doctor if you feel yours isn’t taking you seriously. Be persistent. Don’t be afraid to advocate for yourself. If you believe you need referring to a specialist, then don’t be afraid to voice that. In hindsight, I wish I’d had the confidence to ask my GP for a referral to rheumatology. My Mum has Rheumatoid Arthritis and that family history alone should have been a red flag for my GP. It was in fact a hospital doctor who finally noticed that red flag. She wrote to my GP, after I was admitted with severe pain, to request he refer me to a Rheumatologist. If it hadn’t been for her, who knows how much longer a diagnosis would have taken.

Do I believe it was a coincidence that the person who finally took my pain seriously was a woman? Absolutely not.

This International Women’s Day let’s speak up about the biases still affecting chronically ill women every single day. Let’s try and be the change we want for our daughters! Let’s advocate for ourselves, and others. Perhaps then one day we will see the gender bias in medicine begin to close.