When Amelia Butlin started @cantgoout_imsick – an Instagram account detailing the suffering and strength of chronically ill individuals – she did not expect Lena Dunham to take note. So, when the Girls creator re-grammed one of her illustrations last week (a painting of Lena, which praised her openness around her health troubles), Amelia was in total shock.
‘Wow, this made me cry,’ Lena wrote, before urging her three million followers to subscribe to Amelia’s account. Lena, like Amelia, 25, suffers from fibromyalgia – a largely misunderstood long-term condition that causes pain all over the body, extreme fatigue, headaches and problems with mental processing. known as ‘fibro fog’. The post also detailed how Lena suffers from chronic pain as a result of endometriosis, where tissue similar to the lining of the womb starts to grow in places such as the ovaries and fallopian tubes (last year, Lena underwent a hysterectomy in an attempt to relieve her pain).
Endometriosis affects one in 10 women, yet it can take years for sufferers to get an official diagnosis, with many claiming that doctors fail to take them seriously. Indeed, Endometriosis Awareness Month, which started last week, aims to educate and therefore decrease the average diagnosis time – currently seven and a half years.
Awareness of such chronic conditions is increasing due to high-profile individuals discussing their pain. Last year, Kirsty Young’s fibromyalgia forced her to stop presenting Desert Island Discs, while in a 2017 documentary, Lady Gaga opened up about living with the debilitating condition, which has forced her to cancel tour dates. And last month, Selma Blairrevealed that doctors failed to recognise her multiple sclerosis, as they believed motherhood was the cause of her extreme ‘fatigue’.
When Lena used her platform to re-post Amelia’s Instagram, she opened her up to a virtual world of other chronic sufferers who were all experiencing the same thing. ‘Thank you for this! And so happy Lena shared your Insta – I have Lyme disease and I’ve not been taken seriously by countless doctors and men in general,’ one user wrote. Another said, ‘You are here, your experiences are valid,’ and thanked Amelia for ‘speaking up’.
Amelia, who lives in London, felt isolated in her suffering as a result of dismissive doctors. She was diagnosed with PTSD after the ‘traumatising’ experience. ‘No one took me seriously,’ she tells Grazia. ‘I saw so many doctors. And they made me feel like it was only happening to me. They insinuated that I was making things up and I was a crazy person with symptoms that they’d never heard of before. I was suffering so much pain and no one could help me – it was so isolating and so awful.’
According to health journalist Sarah Graham, Amelia is not alone in her experience. ‘There’s a lot of research into the fact that women’s pain is taken a lot less seriously.’ Indeed, one study has found that women are less likely to be taken seriously in emergency departments than men, while another revealed that women are more likely to be prescribed anti-anxiety medication than men when they come to the hospital with pain. Sarah, who runs the blog Hysterical Women, believes that this harks back to the idea of female hysteria (a misdiagnosis for women that dates back to the Ancient Greeks). ‘I think there’s still a hangover from this ideology,’ says Sarah. ‘This idea that women are unreliable and can’t be trusted to accurately describe what’s going on with their own bodies.’
Chronic conditions such as fibromyalgia, which, according to the NHS, affects seven times as many women as men, are complex, so GPs can be less aware of the symptoms. These largely female conditions are also less well researched, making them harder to diagnose and treat properly. One study claimed that funding for chronic fatigue syndrome (CFS or ME) is 20 times lower than that of comparable diseases, while Fibromyalgia Action UK says there is ‘very little research being carried out in the UK and sufferers are told that there is no cure’.
One reason for this might be that ‘Historically, women were excluded from clinical trials because their hormones were difficult to control,’ says Sarah. ‘Clinical trials for particular medications and conditions were only tested on men. So researchers assumed that you could just extrapolate the results from trials that had been done on men to apply to women.’ As these badly researched conditions largely affect women, you have to wonder: if these illnesses affected both sexes equally, would they have been prioritised by medical research? Fibromyalgia specialist Dr David Edelberg has said that the medical world’s response to the condition displays a ‘medical sexism that’s hard to miss’.
But while there is a gap in physical medical research, the online community of chronic sufferers are pooling their knowledge. Amelia is among the many women who have found solidarity within the online network. ‘It’s so nice to have people to talk to who are going through the same thing,’ she says. ‘Friends just don’t understand and people find it really hard to see someone looking well when they’re actually in pain. The trauma of being sick and people not being supportive prolongs illness. It’s helpful to feel like you’re not the only one going through this.’
‘These online groups are reassuring women that they’re not going mad,’ adds Sarah. ‘They’re telling women, “No, it’s not you. It’s not all in your head. Keep fighting.” It’s really empowering women to advocate themselves better.'