When Imali Chislett developed a rash on her face after an allergic reaction to an injection, she did what most of us would do: she spoke to a nurse.
“The nurse said, ‘You should be grateful, it’s really pretty. It looks like makeup’,” says the 24-year-old from Bournemouth. “And that’s all I was told.”
This is just one of the “crackers” Imali has experienced, an example of the medical gaslighting she says has left her “battling” for answers about her health. She was diagnosed with the neurological condition myalgic encephalomyelitis (ME) – which can cause extreme fatigue, joint pain and issues with memory and focus – aged just two.
‘Mentally, it takes a toll’: what is medical gaslighting?
Medical gaslighting is when a healthcare professional invalidates or dismisses a patient’s symptoms or concerns without proper medical evaluation. The term has become popular online, with over 39,000 posts on TikTok under #medicalgaslighting, particularly among people with chronic illnesses – long-term conditions like ME that can’t be cured but can be managed with medication or other therapies.
‘IT MAKES YOU DOUBT YOURSELF’: Imali Chislett is thought to have been the youngest person ever diagnosed with ME. Image credit: Imali Chislett.
Because symptoms like fatigue can be difficult to measure compared to a broken bone, people with these conditions may rely more heavily on medical professionals taking them at their word.
And it can be dangerous when they don’t. In March 2024 Imali developed sepsis after her bowel perforated. A medical professional in A&E had previously told her to ignore her symptoms, including passing blood, and told her she was being “dramatic”. One emergency surgery and a six-week hospital stay later, she now has a permanent stoma.
Imali Chislett gives her account of her experiences – press play (above)
According to the most recent NHS Health Survey for England, on average 40.1% of adults had at least one long-standing condition between 2000 and 2022. And the death of 27-year-old Maeve Boothby-O’Neill has highlighted the dangers of failing to provide specialist care for them.
An inquest found Maeve died from severe malnutrition caused by ME, having developed the condition aged 13. She was admitted to hospital three times in the months before she died in 2021, by which point she was unable to chew and struggled to drink because she couldn’t sit up.
While coroner Deborah Archer didn’t find any evidence that health professionals treated Maeve’s condition as though it wasn’t a real illness, she highlighted the fact that there is no specialist provision for severe ME in England and called the training doctors receive “extremely limited”.
‘I’ve spent thousands’: what is the impact of medical gaslighting?
For Imali, who has other conditions including Ehlers-Danlos Syndrome and fibromyalgia, it’s the emotional labour as well as the physical danger caused by medical gaslighting that is the issue. “All the time you’re on edge, all the time you’re switched on, all the time you’re trying to keep note, you’re trying to organise departments,” she explains. “I dread every letter that comes in the post, because it’s another three hours of phone calls.”
Imali, who runs a marketing agency with her husband, can’t afford private healthcare. But it’s an option many with chronic illnesses have turned to, including Elaina Knibb, who says she has spent thousands on private tests and treatments after developing long Covid in 2022.
She describes the condition – when Covid symptoms persist for months or even years after infection – as “feeling like you’ve been kept awake all night, and your blood isn’t getting around your body properly, and there’s no oxygen in your eyes and brain”.
HOPE FOR THE FUTURE: Elaina Knibb says she feels positive after private treatment but worries for those who can’t afford it. Image credit: Elaina Knibb.
By the time the 28-year-old was dismissed from her job in May 2023, having been signed off sick for five months, she was one of an estimated 1.9 million people in the UK with long Covid. Her experiences of medical gaslighting have left her “very angry” – and she says the difference between private and NHS healthcare is “extreme”.
At an NHS long Covid clinic, she says she was told her fatigue was due to a lack of exercise despite having previously played in a badminton league. “I was so fatigued it was even hard for me to watch TV at that point,” Elaina explains. “To basically be called unfit, it’s absurd, it’s just silly.”
‘I’ve internalised it’: does medical gaslighting affect women worse than men?
Dr Charles Shepherd, medical adviser to the ME Association, agrees with Elaina that medical gaslighting affects women more than men – in part because chronic illnesses are more common amongst women.
According to the NHS Health Survey for England, women were on average 7.8% more likely than men to have at least one long-standing health condition between 2000 and 2022. During this period, an average of 43.7% of women had a chronic illness compared to 40.4% of men. In December, a parliamentary report by the Women and Equalities Committee found that “medical misogyny” was one reason why women receive inadequate care for reproductive conditions like endometriosis, a condition where cells similar to those in the lining of the uterus grow elsewhere in the body.
Dr Shepherd believes societal factors are at play here. He developed ME himself after having chickenpox in his twenties, and says not taking time off made his condition worse. “If men who go down with [chronic illness] are working, they’re more able to take time off and be sick,” he explains. “Whereas if you’re a woman and you’ve got family responsibilities like children, it’s much harder to actually take time off.”
He’s worried both men and women could be at risk of harmful so-called “miracle cures” as a result of the desperation caused by medical gaslighting, such as supplements and alternative medicines not backed up by evidence. “It’s very sad when people come to us and they’ve spent thousands on totally unproven treatments, some of which may be harmful, and just get nowhere. But you can fully understand why they do.”
‘IT’S CHANGED MY WHOLE LIFE’: Jen Moore says every aspect of her life has been affected by endometriosis and adenomyosis, including having to leave her job.
Jen Moore campaigns for increased awareness of endometriosis, a condition where cells similar to those in the lining of the uterus grow elsewhere in the body, and adenomyosis, where the lining of the uterus grows into the muscle in the uterine wall. Both conditions can cause severe pain, abnormally heavy periods and potential infertility.
“I wish doctors understood no one expects them to know everything.”
Jen Moore
Jen developed her symptoms when she first started her period aged 11 and was put on the contraceptive pill, which is commonly prescribed to manage symptoms, at the same age. “I didn’t expect to be curled up on the floor of my parents’ bedroom, screaming, crying, unable to stand up straight,” she explains. “There was blood loss like a horror film, passing out, dizziness. It was absolutely awful.”
At least one in 10 women in the UK has endometriosis, and it takes an average of eight years and 10 months from the first GP appointment to be diagnosed. Jen’s mother had been diagnosed with the condition when Jen was a toddler, but was made to feel like a “neurotic mother” when she raised concern about her daughter’s symptoms with a doctor.
Jen was only diagnosed with endometriosis and adenomyosis at the age of 33 after coming off the pill and having a laparoscopy, a keyhole surgery which is the only way to formally diagnose endometriosis.
She wants to see better clinical education about gynaecological conditions so that all medical professionals enter the workforce knowing the harm they can cause – particularly because endometriosis has been found on almost every organ in the human body, including the brain. “On top of that, just human decency and empathy. That costs nothing. It takes the same amount of time to deliver a sentence in an empathetic, kind way as in a dismissive and arrogant way.”
Until then, Imali says people with chronic illnesses will continue to turn to other sources of support, including social media. “If medical professionals keep on gaslighting, of course we’re going to go and do our own research. We’re generation Google, generation Chat GPT. We’re not afraid to ask questions. And it’s not because we’re hypochondriacs – it’s because if we don’t keep track of what we’re doing, nobody else will.”
Featured image credit: Imali Chislett, Elaina Knibb and Jen Moore.
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