When the contraceptive pill first became available in the US, women weren’t warned of possible side effects, such as heart attacks and blood clots. It took around a decade before anything was done. In her 1969 book The Doctor’s Case Against The Pill, journalist and activist Barbara Seaman collected testimonies from women who had long experienced these symptoms. Her work led to US Senate hearings on the safety of the drug, which prompted a move to lower doses and inclusion of mandatory information on side effects.
This wouldn’t be the last time voices of women who have poorly understood conditions would long go unheard, even in connection with the pill. Despite strong anecdotal evidence from users, it took until the 2010s for large-scale trials to link the drug to another side effect: depression.
It is a similar story for those with chronic fatigue syndrome, of which 80 per cent are female. Regardless of the strength of testimonies on its debilitating impact, research into this condition was scant until a similar one – long covid – sparked interest and funding.
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When thousands are expressing similar sentiments about their health, we must pay attention
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This week’s cover story on page 36 gives the latest example. For decades, women with endometriosis, an often painful gynaecological condition, have also complained of autoimmune illness. Only in the past handful of years has a possible link been explored via studies. And it was only this year that a full analysis identified a shared genetic pathway between the two, leading to potential new treatments.
Why did it take so long? Lack of funding for female health conditions and squeamishness around female anatomy play a role. But it is vital to be aware of how much less attention seems to be paid – and how much less legitimacy is given – to the complaints of women. When thousands are expressing similar sentiments about their health, we must take heed. Robust data is always needed for concrete medical advice and safe treatment. We might well get there faster, though, if we listen promptly to people, especially women, when they state the realities of their experience.
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