I love a fact. The more surprising the better. Whether I can remember these jewels of information long term is a whole other matter. A shortcoming I was ruing recently as I settled into my contestant chair on The Wheel, Michael McIntyre’s BBC One quiz show in which my job, alongside others, was to help a member of the public answer random questions to win money. (Spoiler alert because the episode is not out yet: I didn’t totally disgrace myself – but the Love Island question was not my finest hour).
Yet this week I learned a fact I think I can safely say I won’t forget.
But having been so shocked by it when it first whizzed in front of my eyes on the big screen during a film premiere, I double checked if what I had read was right. Live on air, in the company of millions of listeners.
Before I get to it, the film in question is a powerful documentary called Below The Belt and tells the story of four women struggling to live their daily lives through the brutal pain of endometriosis, a long-term condition where tissue similar to the lining of the womb grows in other places.
I welcomed its American creator, Shannon Cohn, a fellow endo sufferer like myself, who jacked in being a lawyer to retrain as a filmmaker, on Woman’s Hour this week. She has done a brilliant job at bringing to the screen the unseen; the unseen pain and havoc this silent illness wreaks in the bodies of the millions of women afflicted.
And talking of facts, there are startlingly few when it comes to endometriosis. No one one knows what causes it, whether it definitely is genetic, and crucially, how to cure it. No one has a scooby.
The only route to more facts is research. Lots of it. So to that fact that made me stop in my tracks.
Take a guess which US government is funding endometriosis research? You would be forgiven for thinking it could only be the Department of Health and Human Services. But you would also be wrong.
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It’s the Department for Defense (as the Americans spell it).
I kid you not.
Has the fear of millions of women staggering around in unholy pain finally created a national security issue? Not quite (although I quite like the idea of that).
Here is how Cohn explained it to me and why she and her fellow campaigners petitioned for this unusual funding stream: “Well the standard is does the disease affect the US congress, the US military, or the general US public? That’s the standard. And actually we got the idea to do this because the majority of breast cancer research in the nineties was funded by the Department of Defense. So if you do a bit of research and digging, you start realising that breast cancer research, ovarian cancer research are funded to a great extent by the United States Department of Defense.”
So a precedent had already been set and, just like breast cancer before it, endo more than met the required threshold of affecting the Congress, military or the general population for funds to be released. And cannily these campaigners aped what breast cancer campaigners had done before them.
Mind officially blown. I never knew. But money is money and to be honest, we sufferers ain’t fussy at this point; nothing is changing.
Personally I only started to write and talk about my own experience of this bitch of an illness six years ago, when I was finally diagnosed with endometriosis at the age of 31, after years of failing to conceive. (I didn’t even know I had adenomyosis – endo’s evil sister about which even less is known – until I was 35.) I ended up writing a whole book about periods and the shame and stigma surrounding them. My diagnosis was the last push I needed to go public and tell other women’s stories too, because if I couldn’t get answers about myself, and I ask questions for a living, then what did that say about the state of diagnosis and treatment in this country?
In that intervening time there have been no great leaps forward, despite the best efforts of some researchers and scientists around the world.
Moreover, as Cohn’s film shows, the pain meds and hormonal “solutions” haven’t changed in decades – some more than 30 years. And tragically these treatments can end up with women suffering from other serious conditions and ailments due to longterm and over-usage, such as osteoporosis. This is something we see around the world and here in the UK too. Through being ill with endo, women are getting iller trying to use drugs that aren’t designed for their disease. A cruelty atop of cruelty.
The numbers speak for themselves. While diabetes receives approximately $1 billion in funding per year stateside, endometriosis? A paltry $7 million and it affects the same percentage of women. I cannot find such figures to compare with the UK, either because we don’t have the data, or we don’t have a significant enough spend to report.
But the funding gap here is real too – as is the gender pain gap and women being believed in doctors’ surgeries up and down the country.
And while more profile-raising of endo has happened in the UK over last few years – so that hopefully more women are diagnosed earlier and may have at least heard of the condition when the news breaks – the time is overdue for action and progress to find a cure, or at the very least, an effective set of targeted treatments.
The late Conservative MP Sir David Ames, who was killed while working in his constituency in October of last year by an IS fanatic, became an unexpected but very welcome endo campaigner and champion on this side of the pond. He was the founding chairman of the endometriosis All Party Parliamentary Group and pushed for the publication of an inquiry report which laid bare how bad the situation is for the estimated 1.5 million women living in the UK with the condition at the moment.
His compassionate and important work continues to this day – and while it’s crucial that women share experiences and help each other find the language to describe their symptoms – sharing is only going to get us so far.
Funding research which leads to medical breakthroughs is the only way genuine forward.
One of the most powerful scenes in Below The Belt happens in the first few minutes when a young nurse, Jenneh Rishe, one of the women seeking answers and help, is sat on her sofa concentrating on her breathing; breathing through bone-grinding pain. Her partner asks her if he should stop filming. Through gritted teeth, she replies: “No.”
She knows people need to see this – or as much as you can see an invisible illness ripping through your body like knotweed, hurting everything it touches. Just as I will remember that bizarre funding fact, I will also remember that scene for the rest of my days. It was quietly revolutionary and radical in an understated way – making it all the more arresting and memorable.
It doesn’t need to be like this. Women’s symptoms differ but the hallmark of this disease is pain. We can’t go on like this. Yet right now, there still doesn’t seem to be another option.
