As a new study finds that women are diagnosed years later than men for the same diseases, including cancer and diabetes, Stylist examines the inequalities in our healthcare - and speaks to women who have been affected.
“You’ll grow out of it.”
So said everybody when I started struggling with insomnia at the age of 16. Half a lifetime later and it’s fair to say I didn’t. In fact, not dealing with it almost certainly made it worse, resulting in chronic sleepless nights, panic attacks and untold amounts of frustration. Today I’m managing my sleep issues and related anxiety much better, but only because I finally, belatedly, got some help.
I’m hardly alone amongst women in putting off dealing with my health or mental health. Think back to when you last saw your GP, optician, or dentist. Have you postponed a smear test because it’s a hassle to get an appointment that’s not at 2.30pm on a Tuesday? How often have you gone to work unwell? Earlier this year the CIPD found presenteeism is at a record high, while government figures show we are taking an average of 4.3 sick days annually, almost half the figure of 7.2 days recorded in 1993.
Although women are more likely than men to take time off work – which is unsurprising since they are also more likely to care for elderly parents or children - rates for female sick leave are falling fast. According to research published by Ovarian Cancer Action, women are quicker at responding to the health needs of their partners, children or even pets, taking less than a week to seek advice on any of the former but more than double that time to get help for themselves. More than a quarter prioritise work over seeing a doctor, with nearly four in ten saying looking after their family takes precedence.
“It’s very easy to ignore or dismiss small niggles,” says Sam, 40, a customer experience executive from Cambridge. Sam was diagnosed with cervical cancer at the age of 34, following a smear test that was two years overdue. She had been experiencing bleeding between periods and after sex, as well as suffering from back pain and other symptoms, but hadn’t found time to get checked out. “Women tend to put themselves at the bottom of their to-do list. I know I still do,” she admits. At the time, she had recently moved house and hadn’t registered with a new practice. “I just kept thinking I would get round to it,” she says.
We all know early intervention is key, whether to prevent mental health problems from worsening or to address the early stages of curable illnesses. But we don’t just need to get better at prioritising our health – we need to stop assuming that we are hypochondriacs if we do.
Katherine, a 30-year-old doctor from Winchester, spent six years feeling lethargic, bloated and dealing with diarrhoea, thanks to undetected coeliac disease. Despite being a doctor herself, she left it years before seeing someone. “I was worried I would be wasting my GP’s time, or seem like I was making a fuss,” she says.
For Katherine, this meant years of avoidable discomfort but, luckily, no significant long-term health effects. However, delays in other cases can be life-threatening, as Sam is all too aware. Now six-years cancer-free, she recognises her attitude was misguided and she was fortunate to be diagnosed when she was. “I was brought up to only go to the doctors when you were really poorly,” she says, explaining she generally only went to her GP to get her pill prescription, rather than for check-ups. “I would hate to waste a doctor’s time,” she adds.
Listening to our bodies and heeding their warning signs is critical, for either sex. But for women it can be a thorny issue, because many of us don’t like to be demanding. Perhaps that’s why research in 2014 found women typically wait longer than men for emergency medical attention, while a 2011 study found that our reports of chronic pain were more likely to be ignored by professionals than those of men.
I’m no shrinking violet, but I’ve always taken the view that medical professionals know best. I’ve certainly never been the patient who goes to an appointment armed with a print-out of what I think is wrong. So at a series of check-ups after months of feeling unusually weak and low in energy - despite my sleep having drastically improved - I didn’t question the repeated reassurances that I shouldn’t worry.
Instead, I stocked up on Vitamin D and hoped that time would sort it out. But eventually, after struggling to get even halfway through my workout and finding myself breathless after walking up steps, I asked for a blood test. Cue a call from my doctor warning that my iron levels were dangerously low and that I needed further tests. I’m now dosed up and feeling great, but I wish I’d trusted my instincts and known I had anaemia earlier.
I was lucky; I felt rubbish but it didn’t stop me working, I’ve suffered no long-term consequences, and I got help relatively fast. But I know why I didn’t push my GP harder – because like many women, my instinct was to avoid coming across as ‘high maintenance’.
Society conditions women to underplay our emotions, for risk of coming across as hysterical. We don’t want a ‘difficult woman’ reputation. Yet if we are fobbed off – and wrongly told that our symptoms are just tiredness or stress - we need to be empowered to be able to challenge back.
Jenny, 35, a senior account manager from Oxfordshire, knows this first-hand. At 26 she discovered a lump on her breast and started experiencing stabbing pains. Having seen both her parents die of cancer, she knew to get seen immediately, but it took three appointments before she was finally referred. She was initially made to feel “almost silly” for worrying, despite doctors feeling the lump.
“I was told I was too young for it to be sinister, and that it was most likely hormonal,” she says. “My gut feeling wasn’t satisfied. Even when I returned to report that the lump hadn’t disappeared with my last cycle, I was still told I was too young [for it to be cancer].” It was only after she handed her doctors an article about CoppaFeel! founder Kris Hallenga’s breast cancer diagnosis at 23, that she secured a biopsy.
Jenny was finally diagnosed with cancer but, despite the delays, was thankfully not too far along for treatment. She underwent a lumpectomy and multiple rounds of chemotherapy and radiotherapy, and is now in remission, “although it never leaves you, from a psychological perspective”.
Holly, a 31-year-old charity worker from London, also had her worries dismissed by doctors, meaning she endured a prolonged battle to get recognition that her debilitating periods, inflammation and exhaustion were not just in her head, but endometriosis. “Even after the first surgery I was told to read about my condition online,” she says.
Thanks to her diagnosis, Holly’s health is now improved, but an earlier diagnosis would have been a lifeline, helping her manage her condition more effectively. Yet according to the National Institute for Health and Care Excellence, women are waiting an average of seven-and-a-half years for endometriosis diagnoses, with GPs ignoring the signs or putting them down to period pain.
As these women’s experiences highlight, in specific instances doctors may well be missing the signs or letting their assumptions about women’s health cloud their judgement. But it’s not as simple as putting the blame solely on the healthcare system. The onus is on us, too, to push to get the help we need.
We’ve all seen the headlines about overstretched NHS services. In a 10-minute appointment, GPs don’t necessarily have time to interrogate our symptoms from every angle, and they are not mind-readers. If we don’t communicate our concerns, how can they know we have them?
According to Tracie Miles, a cancer nurse specialist working for the Eve Appeal charity, it is particularly challenging to discuss intimate issues. “We know from experience that women often put off looking after their gynaecological health,” she notes. But symptoms like vaginal bleeding are, she says, “our bodies telling us that something is not quite right”. And as she points out, gynaecological cancers often have better outcomes the earlier they are caught.
“Don’t forget that sensitive problems, such as mental or sexual health worries, are normally really common problems that we see every day,” says Dr Ciara Yeates from the London Doctors Clinic. “I am rarely surprised or shocked by anything.”
Ultimately, taking ownership of our health as women is fundamental. We shouldn’t feel guilty about asking for help or requesting a second opinion, and we need to stop prioritising everything other than our wellbeing.
Dr Yeates suggests writing a list of your concerns ahead of an appointment. “If you had a specific thing in mind, like a treatment or referral, it’s best to mention this from the outset,” she says. “This will help you have an open discussion, and it’s helpful for both you and your GP.”
Of course, we shouldn’t assume the worst – more often than not, back pain is just back pain. But nor should we feel undeserving of a doctor’s time, or let fear of coming across as demanding cloud our judgement. After all, it’s not our fault if we’re unwell, whether from a physical or mental health perspective.
It’s easy to understand why we don’t always get the help we need. But nobody else is going to assume responsibility for our bodies, or know as well as us when they aren’t working as they should.
In the middle of any number of sleepless, tearful nights over the years, I have tossed and turned desperately wishing I had gotten some help. If I could tell anything to my 16-year-old self, it would be to trust my knowledge of my body and my mind, to seek advice immediately, and to be bloody difficult about it.
This is advice we should all take. If something’s wrong, see a doctor and push for answers. After all, it may just save your life.
Holly works at the Juliana project, giving women and girls in Kenya access to sanitary products
This article was originally published on 23 August 2018
Images: Getty, Unsplash