Q&A with Abby Norman, author of Ask Me About My Uterus: A Quest To Make Doctors Believe In Women’s Pain
When Abby Norman was struck down by an excruciating, nauseating pain, doctors were unable, perhaps at times even unwilling, to diagnose her symptoms and take her pain seriously, suggesting instead that the condition was “all in her head”.
Putting her own misadventures into a broader historical, sociocultural, and political context, Abby shows that women’s bodies have long been the battleground of a never-ending war for power, control, medical knowledge and truth. And that it’s time to refute the belief that being a woman is a pre-existing condition.
To celebrate the paperback publication of Ask Me About My Uterus in the UK, and as part of #EndoMonth, we sat down with Abby to find out more about her journey with endometriosis and chronic illness…
Ask Me About My Uterus tells your own deeply personal story, but when and how did you realise that your experiences, and your struggle to be believed, were also part of a much broader, patriarchal problem?
I think in the beginning the temptation was to say that this was all my fault; that it was a reaction to me personally. But then I started thinking about it and realised these people didn’t know me. As weird as my life was, I still felt like actually this didn’t feel personal.
Eventually there were some doctors who found out a bit more about my life, and started to make assumptions, but I think from the beginning I felt this was bigger than me. I kept saying to myself, ‘this cannot possibly just be me’.
It wasn’t really until I started talking about it on the internet that I realised the full extent of that, because i was getting responses from women all over the world – all ages, all races, all experiences – saying ‘yeah, I’m having this exact conversation with people in my life’, and I thought ‘OK, this is a sign of something much deeper.’
In a way there was something liberating about that because it gave me permission to not take it quite as personally. But it also infuriated me because it meant this was a pervasive problem, and lots of other people were suffering the same way that I was. Realising that set me on the path of trying to advocate more broadly, and that was also the eventual impetus for the book, which came after I’d given a presentation at Stanford.
How do you feel the idea of the ‘hysterical woman’ influenced the way you were treated when seeking medical care?
The fact I was a young woman – particularly a young woman who, when I first got sick, was at a college (Sarah Lawrence) that had a reputation for producing really high strung women – seemed to influence the reaction I got from the get-go.
But I was already used to people, or broader society, trying to justify or explain a woman’s behaviour based on the irrationality that comes with having hormonal cycles. I’d been warned about that even prior to getting my period. It wasn’t even something that was coming down from health classes at school – it was a pop culture trope, it was a plot line in books I read. This idea that women were inherently less capable of being rational and calm because they were dealing with hormones was always there.
There are a lot of problems that can be caused by hormonal imbalances, but I think that sort of blanket characterisation is really misleading and really, really old. A lot of that is rooted in the transition from when gynaecological and obstetric care moved away from being something that women did for other women, through midwifery or even just communities of women coming together and supporting each other through those experiences.
When that became medicalised, and men began to dominate that field, you then had men writing the medical text books and designing medical education, so everything is viewed through their lens.
Where do you think you would be today if you hadn’t been so determined to research, understand and advocate for your own health?
It sounds really predictable and a bit flippant to say this, but the very simple truth is that I wouldn’t be here, because one of two things would have happened. I would have either eventually gotten to the point where the infective process would have become septic – it was already kind of headed there anyway – and I would have died for that reason.
Or, there have been several points where I was actively preparing to take my life. I wasn’t necessarily depressed at that point, but I was overwhelmed by the pain and sickness, and the hopelessness of that.I was just exhausted, and so tired that I just wanted to die so I could rest and stop doing this. I really did think at some level my body was just going to give out – and to be honest with you I still feel that way sometimes.
I think part of the reason why it got so bad was because I had to advocate, because I had so many untreated infections, and so many things went wrong and weren’t caught. I had to be under so much stress, physically and emotionally for many years, which has now led me to this point of chronic ill health. In a way it feeds that cycle of asking ‘what if?’, and I try not to do that anymore. You can drive yourself into a really bad place going down that road.
I’m at a point now where it’s more about acceptance than anything else, and that’s really part of what it means to continue to advocate for yourself. One of the big things since the book came out is that now I have a platform, and I feel a responsibility to balance my own needs with trying to set a reasonable example.
What are the biggest and most frustrating lessons you’ve learned since becoming ill?
Trying to come to terms with the fact that, had things gone differently much earlier in the process – if I’d had more resources, if I’d had more support – I would have had a different outcome. That’s not just something that I think, that’s something that has been said to me many times by medical professionals, who are unhappy and frustrated on my behalf that people who came before them missed things or failed to do things that would have changed the outcome for me.
What I can take away from that now is that, although I know I can’t change my own story, every now and then I get emails from people for whom my book has intervened and gotten them on a path that means hopefully they’ll get there sooner than I did. I am very much at least relieved to know I’ve produced something that is a tool and that comforts people. At least I’ve done something useful there.
I am still sometimes frustrated that I didn’t get to benefit from it in that way. My life would have been different if I’d had this book at 17, 18, 19 – emotionally it would have made a difference to me. I get sad about a lot of the things I missed out on, but I feel like it’s now time to let go of what I think I missed out on in my young life.
How has connecting with other women in a similar position helped you, and what have you learned from them?
On one level I find social media very intimidating and overwhelming – but one of the reasons I actually enjoy it is because of the connections I’ve made through my book, or through the advocacy that I’ve done, who’ve turned out to have lots of other things in common with me other than endometriosis or chronic illness.
People are more than just their illness, and I think about that so much because it was the big thing that just changed my life about the New York Times review of my book. Randi Epstein said: ‘Norman’s life is more than her disease’, and that was such a revelation to me, because I do have all these other side things and interests that I’m trying to patch together.
Finally, the big question: how do we solve this problem of medical sexism?
I always say that I do think we have reason to be hopeful. There are a lot of places where things are being done. On the research level, we have people like Noémie Elhadad at Columbia who’s got this incredible citizen science initiative through their Phendo app. They’re trying to build the research to create a phenotype for endometriosis, which is one of the core components of the research that we do not have yet.
One of the big challenges though is the way the healthcare system in the United States works, and the medical education system. We need to challenge those patriarchal structures at a higher level than the majority of us at patient level can get to.
The best thing we can do is support each other and continue to empower each other, but we also need to be aware that there are some things that are way, way, way higher up in the hierarchy. We need allies at the administrative level, at the clinical level, at the research level, and also at the educational and broader sociocultural level that dictates how people learn to be medical professionals. If we don’t see change get made there, we’re not going to make progress.
It’s not going to be easy, and it’s not something that we’re going to change overnight, because we’re working with centuries of historical precedent – not just socioculturally but in terms of this whole structure of medical education. It’s going to take a lot of work.
One of the things about this year that’s been so incredible was that my book came out along with a bunch of other books that were really really good and all very strong testaments for why we need to be looking at this, so we have this growing body of literature now that can be used. My book’s been taught on medical school syllabuses about women’s pain theory!
People have tried to call it the medical #MeToo movement, but I think it’s just a sub-group of that broader movement. Sometimes it feels like you’re taking a step forward and two steps back, and that’s frustrating, but I think the important thing is that we keep hearing many more stories, from many different perspectives, to help this conversation grow and become stronger and more inclusive. That’s really what the goal of the feminist movement needs to be.
Buy Ask Me About My Uterus on Amazon, out today in paperback.