The year was 2023, and after 10 years of living in pain every day I finally got officially diagnosed with Fibromyalgia. I knew what I had two years before the official diagnosis, but the process took forever due to the fact that the NHS, the UK’s healthcare provider, is wildly underfunded. When you get diagnosed with a life-changing disability, you kind of expect to have an abundance of information at your disposal so you can find out more about your condition. This was not the case for me.
Common symptoms of fibromyalgia
Credit: Mikael Häggström, CC BY-SA 3.0, via Wikimedia Commons
Gender Bias in Medical Research
In fact, comparing what I learnt four years ago to what we know now, not much has changed. We still know so little about fibromyalgia. While talking with a doctor during one of my many visits, I pondered why this was the case. I jokingly said, “is it because it mostly affects women?” and was taken aback when he confirmed that this was likely the case. I immediately got to researching this when I arrived home and what I found was horrifying.
Kerri Smith published an article in 2023 showcasing that diseases that mostly affect men tend to get more funding. Endometriosis, fibromyalgia, myalgic encephalomyelitis (ME/CFS), autoimmune disorders, Alzheimer’s, breast cancer, and HPV are just some of the diseases that affect mostly or only women, and are all areas in medicine that are greatly under-researched. A literature review published by Merone et al. for James Cook University showcased how women, throughout the history of medical research, have been excluded. Women also have a tendency to end up over-medicated due to a lack of representation in drug trials.
Credit: Royal College of Nursing by David Hawgood, CC BY-SA 2.0, via Wikimedia Commons
Underdiagnosis and Misdiagnosis of Women’s Health Issues
These biases contribute to the frequent misdiagnosis of autism in women, as our historical exclusion from medical research has left us underrepresented, even today. The Royal College of Nursing found that on average it takes 7.5 years to be diagnosed with endometriosis, a condition where tissue similar to uterine lining grows in other places in your body, often fusing your organs together. If you’re thinking this sounds bad and life threatening, you’re right. It is. Additionally, women are far more likely to deal with medical negligence and burnout. A UK report found that over 56% of women felt their pain is neglected or ignored by professionals. And, to bring in a personal note, this is definitely something I have faced myself. You can only hear “are you sure you’re not just a bit sad?” or “try eating better” or “this is all in your head” so many times before you finally give up and stop going to doctors altogether.
Signs of Progress
But, despite the doom and gloom, we are seeing things change slowly. Last year, a company started testing menstrual products with blood instead of saline solutions, as well as the discovery that endometriosis is potentially caused by bacterial infections. This year testers started using a crash test dummy that is actually proportional to average female bodies, which may not be strictly medical, but definitely is a win for women.
Governments are also trying to shift some focus into medical research targeting women, with the UK Government pledging to do so earlier this year. Let’s hope the rest of the 2020s continue to bring changes for the better.
Credit: hashi photo, CC BY 3.0, via Wikimedia Commons
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