Gabrielle Jackson is a Sydney-based Guardian journalist who has written a book about her pain, and the pain of women, and the ways in which the medical system is making it worse.
The book is called Pain and Prejudice: a call to arms for women and their bodies. It focuses on ‘women’s troubles’ – a constellation of common conditions that cause chronic pain. I could only read little bits at a time before having to get up and stomp around the house.
Jackson’s reporting is meticulous, each data point and argument securely pinned to a reputable person or piece of research. She has done the hard yards. But I also feel a bit like women summoned this book into being with the sheer weight of our pissed-off-ness.
Just the other day Rebekah White, the editor of New Zealand Geographic, compressed 15 years of pain into an essay that all but seared a hole in my screen. Headline: “It turned out that I wasn’t making it up.” Sample: “I’ve been telling doctors about this pain since I was 16. These are the things they say to me: Your pain is normal. Take the pill, it will help. You probably have endometriosis, but we don’t know, and anyway, you’re too young for surgery. Your pain is normal. Take this other pill … ”
(White wants other women in her situation to get in touch with her; you can do that here.)
So many are suffering: one in 10 women of reproductive age have endometriosis, let alone all the associated conditions. Last week, in the journal Overland, Danielle Moreau set out another reason we should all care very much about making sure these women get proper care, drawing a straight line between anti-vaxxers and a learned mistrust of the medical system.
Jackson told me she understands the impulse to turn from the traditional, and research indicates that the main conditions driving women to “alternative medicine” are chronic pain and chronic fatigue syndrome. “Personally, I don’t think I could ever bring myself to condone anti-vaxxing. The answer to a lack of science should never be a rejection of science altogether.”
In the book she weaves her personal experiences with chronic pain into a much bigger picture, detailing female anatomy, menstruation and menopause, reaching back into the (horrifying, infuriating) history of hysteria, and forward into the future of pain research.
Perhaps most importantly, she sets out the way in which women’s pain tends to metastasise. Endometriosis is just one of a group of conditions that frequently trigger one another, she writes, leaving women so clotted with symptoms doctors don’t know where to start – and often don’t bother. Many women are left writhing in the too-hard basket. But catch pain early and this vicious cascade – of irritable bowel syndrome, chronic fatigue syndrome, migraine, chronic pelvic pain, pain, pain, pain – can be stopped in its tracks.
Upshot: we need to take women’s pain seriously, and we need to start when they’re young.
I had to chop heaps out of this interview because we both talked a lot.
I’m so angry.
I was really angry while writing it too.
You did a great job of not being a hysterical woman, considering.
I had to really stop myself at times.
I was really conscious that I wanted doctors to read it because nothing will change without them. So I tried very hard to be fair to the medical profession. That’s why I have that whole chapter on [how] you can’t actually blame individual doctors, this is an institutional problem.
There’s a scene you wrote about taking yourself into ED with strange pelvic pain and trying to stand up for yourself but basically being told to get lost. I wondered if after writing the book, would you do anything differently?
I’ve thought about it so much. I definitely would not go in talking about my endometriosis.
Isn’t that just ridiculous.
I know. I thought I was doing the right thing, but [doctors] just think, ‘Oh she’s just anxious about her health’. They think of people – women – with chronic diseases as hysterical. So you have to really tread a fine line between standing up for yourself and not acting like you’re an expert on your health. It’s crazy. [So next time I] would give the least amount of information about my health as possible.
My partner [a doctor] really urged me to make a complaint because he was so appalled at how I’d been treated, but I felt stupid because it actually didn’t end up being anything really bad. I’ve since had another episode almost exactly the same. And I didn’t go to the hospital this time, I just kind of waited it out at home.
Because of that earlier experience?
Yeah. First of all, I know that they’re not going to know what’s going on … But I feel really conflicted when talking about this, because I feel like my problem is just the tip of the iceberg. If you’re a woman of colour or someone transitioning or have any kind of minority status it’s 100 times worse for you.
I’ve spoken to people who were like ‘Women just have to stand up for themselves.’ Well, that actually doesn’t work. I did that, and that works against me. So this is not about women changing something about them. It’s about medicine having to change.
The first section, on anatomy and menstruation and so on almost functions as an educational text. I mean I’ve been through IVF, I have two children and yet I was still learning stuff.
One tiny thing really stood out for me: the day I learned about the way the egg and sperm interact … it’s like, no, the sperm doesn’t just come along and pierce the passive egg, that is the opposite of what happens. The egg is an active participant, and this is a metaphor for so much of human existence – this idea of the passive female and the go-getter male sperm, it’s just not how it happens at all.
I loved that you used the word “bumbling” to describe what sperm actually get up to in the Fallopian tubes.
Laughs. Yes! They just get there and then they have a little rest. And the female has to go and do the work … I kept finding things like that, like OH MY GOD.
[Educating women like this] gives us the basics, the information, to say, ‘We need change, from you.’ It’s recognising we can’t change it on our own but that we’re going to be demanding it.
This happened with breast cancer. Women used to be told this is a lifestyle problem, it’s because you delayed childbirth, it’s a career woman’s disease. It’s only when women said ‘No more, we want better’ that suddenly the money was found to do proper research and to have cures and treatments that actually worked. That never comes from inside medicine.
I’m thinking of your line “we are so, so tired”. That sounds like a roadblock in terms of asking any more of these women.
That’s so true. And actually Susan Evans, the pain physician who I interviewed in the book extensively, she said this is a problem with chronic pelvic pain and endometriosis and adenomyosis: women are too tired to do that work that the breast cancer survivors did … Women with these chronic pain conditions, often all they can do is the bare minimum.
I feel a bit disheartened because the Australian government has just released another women’s health report without mentioning pain, and I’m just like, this is a major factor in so many women’s lives and it’s just being ignored, like it doesn’t exist.
And when I looked up the clinical trials database on endometriosis, there are no new novel approaches being investigated.
There’s that classic line that if men were suffering from X condition then this would’ve been solved ages ago. Do you think that’s true or is there something about the science that is confounding our ability to move forward?
It is not the same for men. Men don’t go in doubting themselves already because they’re told they’re hysterical …
[Deep sigh]. If it was widespread among men then the policy makers who are in charge of allocating money for research would know someone [with endo or another chronic pelvic pain condition] and they would allocate money, they would believe it, they probably wouldn’t think that their mate was making it up.
It is a difficult one to answer really but I do think if it were as widespread among men as it is in women there would be much more change. I mean I think it’s just that there’s been such a lack of curiosity about women’s health because everything about women is inferior. It’s not interesting, it’s not important.
But what could be more interesting than the fact that maybe women and men feel pain differently? I think that’s fascinating. And can you believe that no-one’s really bothered to find out why women live longer? It’s just extraordinary.
I think the immune system and how pain is felt is the huge new area of research, it’s still not getting the funding it needs and that’s partly because not enough is known about it to do the [necessary] kind of research grant applications.
Sometimes with a new doctor I am so wound up from a previous experience that I probably do come across as an hysterical woman. Just the anxiety attached to walking into a certain hospital, I have a panic attack. That must be feeding into it too?
In the chapter on medical practice I say doctors are actually creating the anxiety that they complain about in women. Women are having such bad experiences that they do go to the doctors feeling anxious about their health. And that’s one of the questions that they use to find out if you’re a hypochondriac! I mean, the circular logic is infuriating. It really is.
And it’s not helping anyone. It’s not helping women who want answers and it’s not helping doctors find out actually what’s wrong with their patients. Medicine really needs to have a reckoning where they say ‘Look our attitudes towards half the population are really wrong.’ And take some responsibility for the anxiety they’ve created in female patients.
I do try to be conscious that even though I’m really fed up and angry there are people who are probably way worse off than me. I saw an interview with a guy who had transitioned from a woman and he had endometriosis and he said luckily he’d found a really great doctor in the end but the attitudes to him – [his pain] was just completely dismissed, it was like ‘Oh, it’s just the hormones you’re taking to transition’. [He had been in] incredible amounts of pain.
I was intrigued and appalled by your chapter about the over-diagnosis of borderline personality disorder among women. I’d never heard that before.
Me neither! And I didn’t even ask about it, it just kept getting brought up. I really want to do more research into that …
It’s just terrible. Quite a few doctors raised with me that it’s just being diagnosed in teenage girls way too young, and then they’re written off for life. And it’s just their personalities! Young boys who rebel are not given that diagnosis. It’s only given in men when they’re mass murderers or something. Most of the men who have it are in prison. That’s how severe it has to be for a man to be diagnosed with it. But any girl who is not acting in her accepted feminine role can be given that label and it’s really dangerous, because they won’t be taken seriously. They don’t want them in emergency departments, doctors think they’re manipulative and horrible and they can’t be fixed.
It was so effective to have that in the book alongside the history of hysteria. Here we go again. Or here we still are.
Exactly. Yes. they’ve just changed the labels.
I find it odd that we as a society instinctively indulge little girls’ pain, we tell them it’s okay to cry and come to us for cuddles – and then at some point that must flip.
Yeah I think when it has anything to do with ‘girl’s troubles’ it’s just normal. And because a lot of this pain is hereditary, often mothers and aunts and sisters have suffered themselves and so they think it is normal, so they say ‘That’s just normal, sorry that’s something we have to go through.’ Not knowing that it’s actually not. Also a lot of the time girls are taught not to talk about that kind of pain because it’s dirty and embarrassing. I never told my dad about my period pain. And I never told a boss about my endometriosis until I was in my 30s. I just would make up I had diarrhoea or something when I couldn’t go to work, rather than be honest.
I’ve just had a daughter and I’m thinking about how best to help her …
I think firstly, make sure she knows that her worth is not judged by the pleasure she gives to other people but by her own humanity … And secondly, not to ever think that pain is normal. If it starts to interfere with her life, if she starts missing school every month, investigate that. Pain is a sign that something’s wrong. Just have the confidence to say, this isn’t good enough.
What should I read next?
Angela Saini’s Inferior and Maya Dusenbery’s Doing Harm. They really spurred me along and gave me new directions to go in. And new insight. Angela Saini’s book, oh my god it makes you so mad. She’s a science writer so she goes through all the science of female inferiority just one thing after the other.
I think these books are really important in dispelling the myth that women are the weaker sex. I mean for fuck’s sake if men did half what we do, they would be rioting.
I think it’s recognising that we’re not inferior. That we don’t have to put up with this. And having the confidence to complain.
Pain and Prejudice: a call to arms for women and their bodies, by Gabrielle Jackson (Allen & Unwin, $32.99) is available at Unity Books.