I apologise that this post is a day late. I have felt resistant to writing it and couldn’t understand why. It turned out that I knew, deep down, that I would end up mentioning something that would be difficult for people, especially those close to me, to read, which was making me hesitate. But I talked it over with a couple of people close to me and eventually felt ready to finish writing the post. Be aware, though, that there are a few potentially upsetting moments in this post. However, I do think it is important to share these stories. These are things that so many women have experienced.
I feel I need to add at the beginning of this post: ‘not all doctors’ (or nurses, midwives, health professionals). Although, I suspect, just as the only men who demand that women say ‘not all men’ are exactly Those Men, the doctors who would want me to say ‘not all doctors’ are probably Those Doctors.
But, to my medical, nursing, midwifery friends who are reading, I know how hard you work in less than ideal circumstances, and I appreciate you. These issues are systemic. No individual person is to blame and no one can change this on their own. It will take all of us working together.
I have been rather quiet this week, on Substack and in real life. I have spent much of my time reading, enthralled and enraged, Elinor Cleghorn’s extensive history of medical misogyny Unwell Women: A Journey Through Medicine and Myth in a Man-Made World. (Thank you to my friend, Kate, for giving this to me almost a year ago! My tendency to stall on books that I am desperate to read is a whole other post…)
Cleghorn’s book charts the long history of women’s struggles to have their own bodily experiences acknowledged both by medical practitioners and by society in general. She describes the continuing lack of understanding of the female body, starting with the Ancient Greeks and their ideas about a womb that became ‘“vexed and aggrieved” if its desires for childbearing were not met’,1 through to the modern day, as ‘autoimmune diseases increase [women are disproportionally affected], and medicine still can’t explain why’2. In the book we meet a wide range of women, from Trota, a female doctor living in twelfth century Italy, to May Edward Chinn, a Black physician working in Harlem in the 1930s, who later went on to become ‘one of the most important figures in the history of early cancer detection for women’3, via countless other women who have suffered and fought to have their bodily autonomy and experiences recognised.
Many of the stories in this book are heartbreaking and horrific. The author ends the book with her own story of living with unrecognised lupus for many years, until her lack of diagnosis caused serious, life-threatening issues, first for her unborn son, and then for herself.
Like Elinor, and like so many women I know, I have been ‘on the receiving end of withering glances, eye-rolls, smirks and heavy sighs’ from doctors.4 I have written about one of these experiences in my post ‘My Allotment Story’.
I have experienced various hard-to-explain periods of being unwell, most of which have been met with varying degrees of lack of care.
There was the doctor I saw when I was first ill with ME, aged 19, who recommended I took up horse-riding, which was an unpleasant mix of misogyny and classism (oh, and he also committed a minor sexual assault against me. Yeah, I know I should have reported him, but, well, frankly I’m glad I didn’t).
Then there was the impatience of some midwives at my inability to ‘relax’ enough to get my blood pressure to go down, when I was pregnant with my first son and had pre-eclampsia, complete with a blinding headache and epigastric pain. Yeah, I just needed to ‘relax’. That would have solved the problem.
There was also the GP I saw when I first developed severe joint pain about 18 months after William died, who, when I explained the pain was so bad that I couldn’t lie down and had been sleeping in an armchair with my feet propped up for weeks, and could barely even get to the bathroom, shrugged and asked me what I wanted her to do about it. I don’t know? Investigate why an otherwise healthy woman in her mid 30s is almost unable to move due to pain?
One of the difficulties so many women face is that our ‘pain is much more likely to be seen as having an emotional or psychological cause, rather than a bodily or biological one’.5 To my mind, this seems further complicated these days when we are becoming more aware of the real effects our minds do have on our bodies. In books like The Body Keeps the Score by Bressel van Der Kolk, and When the Body Says No and The Myth of Normal by Gabor Maté, we are presented with scientific evidence of the connection between emotional health and physical health. I appreciate this growing understanding, and am searching for ways to use this to improve my own physical health, but I fear that this connection will be used to blame women, in particular, for any physical ill health they suffer, and to further deny them treatment. Whatever the cause of any physical health problem is, doesn’t it deserve investigation and whatever treatments are available? We would never blame a man in his mid 50s, with a high powered job (a stereotype, I know), for his heart attack, or deny the very real physiological changes that stress had caused in his body that required treatment.
On the subject of heart attacks, this is another issue that women face: that there has been insufficient research into the different ways our bodies present when suffering from various health conditions. Heart attacks are a classic example of this. Caroline Criado Perez has written about this in her book Invisible Women, and, in Unwell Women, Cleghorn describes how, when having a heart attack:
women often have no chest pain at all, but rather referred pain in their stomachs, necks and shoulders. The onset of a heart attack in women is often accompanied by nausea, fatigue and breathlessness, symptoms historically dismissed as emotional and hysterical.6
An otherwise well women may find it difficult to know whether to take these symptoms seriously; for women with existing chronic health issues it might be almost impossible.
And this is a major part of why both individuals and the medical profession need a better understanding of women’s health, including chronic and currently untreatable conditions. So that we can differentiate between conditions that are chronic (although we still deserve whatever treatments there are available that might improve quality of life) and those that are more acute and need treatment more urgently. I know that I am not alone in being incredibly hesitant to access medical care, after years of being fobbed off and disrespected. I try to treat myself at home as much as possible, for fear of being seen, and labelled, as complaining or even as a hypochondriac.
For example, I am currently suffering with issues around shortness of breath and pain when breathing. I am putting this down to ‘hay fever’ or seasonal allergies (and I do have other symptoms that point towards that as a possibility), and taking, errrr, a lot of antihistamines, which is helping. Sort of. Given that I have a history of autoimmune issues, and that developing hay fever in my 40s seems surprising, probably I would be better off getting this investigated. Maybe it is allergies? Maybe it is a histamine intolerance situation? Maybe I have another or a worsened autoimmune condition? Maybe it is something else? Who knows. But… I’m going to live with it for now. I have very little hope of persuading a GP to investigate the issue, and it feels like the more I speak about my health issues, whether to doctors or more generally, the less I am believed.
In their 2001 study ‘The Girl Who Cried Pain’, Diane Hoffman and Anita Tarzian show how the way women speak about their pain affects how people respond. Explaining the results of the study, Elinor Cleghorn writes:
If a woman was perceived as overly verbose or focusing too much on how her pain affected her personal life, then she was more likely to be suspected of exaggerating. For centuries, women who talked too much about their pain had been stigmatised as fusspots, time-wasters, attention-seekers.7
Oh dear. If a woman talks too much, she is exaggerating, but if she talks too little, then she is blamed for not getting the healthcare she needs, as can be heard in this episode of Woman’s Hour in which Nadine Dorries tells women they should fight harder and demand treatment.
Women face an impossible balancing act when they enter a healthcare professional’s office. They have to be speak up and be assertive. Oh, but not too much! Don’t be a victim, but also, don’t be aggressive!
One way women can talk, though, is through sharing their stories. Throughout Unwell Women there are examples of what happens when women get together to share their experiences and to pool their knowledge. Elinor Cleghorn writes:
Real change happened when women spoke on behalf of their own bodies and those of others, when they created knowledge by listening to other women, when they challenged, countered and resisted oppressive ideas.8
By telling our own stories, and reading and listening to the stories told by other women, we can find new strength. There is comfort in knowing that you are not alone.
To finish off this newsletter I am going to share a few Substacks written by women with experience of chronic ill health. There are many of us on here, and this is just a tiny sample. (Apologies to the many women whose Substacks I have omitted.)
First, Josie George, who writes about her quiet and slow life. You can also find her book, A Still Life, here.
Next is Kelly, writing at The Disabled Ginger. Her recent posts Pregnancy Will Likely Kill You but You May Want Babies! and My Most Dangerous ER Experience and How My Advocate Saved My Life illustrate the dangers of medical misogyny.
Then there is Rachel Katz, writing at Inner Workings and with a wonderful podcast called Lady’s Illness Library.
Finally, Amber Horrox writing at Warrior Within. Amber is a woman who has taken her healing into her own hands after struggling to get answers from the medical profession.
There are so many other women writing about their experiences on Substack and in other places. We need these stories. We need to tell our own, and we need to listen to others.
If you haven’t already read it, do check out Unwell Women. It is a fascinating read, although horrific and heartbreaking in places.
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Elinor Cleghorn, Unwell Women: A Journey Through Medicine and Myth in a Man-Made World. (London: Weidenfeld & Nicolson, 2021), p.27.
Cleghorn, p.414.
Cleghorn, p.365.
Cleghorn, p.406.
Cleghorn, p.3.
Cleghorn, p.387.
Cleghorn, p.394.
Cleghorn, p.11.
Thank you for this post. I developed two chronic illnesses - fibromyalgia and ME/CFS - during my marriage due to stress and abuse. They misdiagnosed me with rheumatoid arthritis for years, and one male rheumatologist dismissed so many of my concerns. I told him that taking prednisone made me feel awful - what did he do? Prescribed me more! I didn't take it. I also remember going to see a male urologist who said I had a bladder infection and prescribed me antibiotics - which I did not. His female nurse told me he did it all the time. Finally, a wonderful female doctor at the Mayo Clinic diagnosed me with ME/CFS. I felt seen and validated. But now I have to live with these two illnesses, neither of which have cures, but just must be managed. It's disheartening. I'm looking forward to connecting with other women on Substack dealing with chronic health issues.
A day late but for good reason! A wonderfully written piece and one that also resonated with me. I am grateful everyday for the NHS but that doesn’t mean that the system is perfect. In my late 30s and early 40s I went to the GP a number of times with what I now truly believe were perimenopausal symptoms and was told I was too young and fobbed off. So much so that almost 10 years on I have not returned for advice or help out of fear of being ignored and feeling like a time-waster again. Thank you for sharing your story.