A world where it’s okay to tell a woman she isn’t really ill; she just wants TikTok fame.
Chronic Illness is a very real and serious issue. So why do people feel that they have the right to minimise it, or deny its existence all together? Simply, most people are uneducated on the topic, or they are so arrogant that they feel they know better with zero medical qualifications.
There are many chronic conditions, but in most cases, not many people have heard of them, or know much about them. Whilst these conditions each come with their own symptoms and struggles, many have overlaps, or commonly occur alongside each other (also known as comorbidities). These conditions vary in severity (from condition to condition, person to person, and day to day). One person may be able to attend school and work, whereas another may be bedbound and unable to participate in tasks that most people wouldn’t even have to think about.
As a young woman who has been living with multiple chronic illnesses for over 5 years now, I am very aware of the struggles that it brings, and the attitudes that many people hold towards us. However, there are still days where I am shocked to read the things that I come across about this. Today was one of those days when reading the thoughts of Poppy Coburn in The Telegraph.
Coburn writes about chronically ill young women that she has seemingly decided “won’t want to get better” and have “convinced themselves they are sick without good reason” with chronic illnesses that are simply “preferred labels”. She frames her judgements as questions that she has clearly already decided the answer to (“Are the young women sporting crutches and ever-expanding lists of chronic ailments just malingering?”).
These young girls are sharing their experiences and creating a community of support for those who are going through the same thing, yet people can twist that into something negative. She acknowledges the “cruel” nature of people being labelled “sickfluencers” when sharing their lives online and yet decides to further this narrative anyway. Online bigots blame mass hysteria, and commenters claim, “these girls have no idea what suffering is”, but how can they decide whether someone has suffered or not?
Many of these young women being targeted online for being brave enough to be open about their struggles are still only teenagers. It is shocking to me that adults feel happy to sit and accuse often severely unwell children of being fakers, without any real idea what kind of struggles or loss they have dealt with at such a young age.
Coburn frequently mentions how chronic illnesses are more common in women as if it’s some sort of proof of trend, without considering why this is. She makes dangerous claims that “Young women are also more likely to get caught up in “social contagion”” and that “Young girls seem particularly vulnerable to over-medicalisation” , and disregards people that speak out about medical misogyny and gaslighting, “Doctors, instead of providing much-needed support for a patient, have been cast as old-fashioned bigots standing in the way of an individual’s “self-actualisation””, without considering the fact that it is real and women have historically been disregarded in medicine.
A study conducted by The British Journal of Cardiology found that 48% of participants with PoTS were advised that their symptoms were due to a psychological or psychiatric disorder, such as anxiety, panic disorder, depression, or hypochondriasis. This misdiagnosis occurred in a higher proportion of women (75% of female patients) than men (25% of males).
Women are 50% more likely to be misdiagnosed following a heart attack and are statistically way less likely to be included in trials, including on cells as it is usually male cells that are selected even though female cells react differently. When they are included, it is often during the early follicular phase of their menstrual cycle, when hormones are at their lowest (when they are the most like men).
A 2001 study by researchers at Maryland University found that women were less likely to receive aggressive treatment after diagnosis and were more likely to have their pain dismissed.
Women have historically been described as hysterical when seeking medical treatment. The word for the removal of the uterus (hysterectomy) literally comes from the word hysteria. Women have always been labelled ‘crazy’ or ‘mentally ill’ for physical issues, and if that isn’t considered gaslighting then I don’t know what is. Coburn plays into this further by adding, “they broadcast their struggles to an online community of like-minded individuals”, the phrase “like minded” implying simply mindset rather than a shared physical illness.
All of this, and these women’s lived experiences blatantly show how women are taken less seriously when presenting with a health issue, and this harmful narrative is used frequently by news outlets and online trolls.
I know personally how difficult it is to find out what is wrong with you when so many doctors are unaware of these conditions or refuse to believe in them.
These conditions aren’t just getting diagnosed on a whim because someone decided it looked like fun on TikTok, despite what critics may lead you to believe. What is often happening, is young people are getting sick, and they are turning to others who have the same condition for help on how to manage it. Without adequate support from their doctors, chronic illness is a nightmare to figure out on your own, and it is lonely. People are building a virtual, accessible, alternative to support groups, and that is a beautiful thing.
As for the rise in these conditions, they aren’t new, but more people are becoming aware of these conditions, and it is partly to do with a rise in sickness. Not via “social contagion”, but due to a massively disabling world event that happened six years ago. Covid is a massive contributor to post-viral illnesses, and that is the unfortunate reality.
Just because you cannot see someone’s condition, does not mean it isn’t real. Conditions like PoTS or ME/CFS, whilst they do not have biological markers currently available on blood test, do have diagnostic criteria.
The unfortunate reality is that these conditions often take years to be diagnosed. This isn’t because they aren’t real, or people are faking it. This is because there is a severe lack of education on chronic conditions for medical professionals, and there is a massive lack of funding and research for helping people who have them.
Coburn comments on these women’s appearance, noting that they are often “beautiful”. The indication that this is relevant implies that beauty and disability don’t occur at the same time or should not. Being disabled and being beautiful are not mutually exclusive, despite what an ableist society may lead you to believe. Sorry if you expected us to be ugly.
This continues as she mocks people’s “pink wheelchairs and walking sticks, compression socks embroidered with flowers”. When someone uses medical devices and mobility aids every single day, it is completely reasonable that they want to feel good about themselves while using them. Many of us feel embarrassed about our mobility aids, especially in the beginning. So many medical aids are so hospital like and aimed at the elderly. This customisation allows us to feel a little more like us. If you had to have tape stuck to your face all day, wouldn’t you rather it had hearts on it? Or wouldn’t you rather sit in a wheelchair that’s your favourite colour, with lights that show a bit of your personality?
There is also frequent mention of how their conditions are “mild”, and “can be resolved with minimal medical intervention”. She brands the conditions as “normal emotions”. I’d love to know how she concluded that their conditions are mild, or why she feels qualified to diminish their struggles, especially considering when she listed off acronyms for illnesses in the beginning that are very far from mild.
Take M.E for an example, as Coburn included it in her list. Sufferers of M.E (Myalgic Encephalomyelitis) are brutalised online for sharing their life with a condition that is established as having one of the lowest qualities of life for a chronic condition. I have never seen anything like how they get treated. Even on the ‘mild’ end of M.E, patients experience severely disabling symptoms and are often unable to work. This is because on the ‘very severe’ end, they are bedbound and sometimes unable to tolerate light, eat, or speak. It is so severe and alarming that some doctors are moving their research from oncology to M.E, stating that the people they see that are sick with it are often sicker than cancer patients.
She adds that “Mild sufferers of chronic disease rarely experience just one” and “It would require incredibly bad luck indeed for so many of these women to be afflicted by so many completely different illnesses” But if she had done any research into the matter, she would find out that those affected by certain genetic disorders or conditions are more likely to be affected by more than one, as they are linked. This is known as a comorbidity.
It’s horrific to assume that anyone would want to be sick, let alone that they have “the desire to increase one’s status through suffering, or to enjoy a larger community of supporters.” Tell me Poppy, did I grow endometriosis and have it cut out of me, just to gain another TikTok hashtag?
Most of these conditions have no cure. They have few viable treatments for management of the conditions. We fight constantly for something that can help us.
I have some more questions for Poppy Coburn and anyone who finds themselves thinking the same things about the chronically ill. Do you believe that disabled people should be hidden away?
When disability affects every aspect of your life, it would be very difficult to share your life without mentioning it. Do you think that they should pretend not to be ill? Would you rather they wrapped up what you believe to be an act they put on for sympathy?
Disabled people deserve to be seen. They deserve community. They deserve to raise awareness for conditions that take and take from them and yet receive such little funding and have so few treatments. And if your problem is believing that they are genuinely ill, this is what I’ll ask you:
Would you like to give up all your hobbies? Would you like to give up on your dream career? Would you like to rarely see the people you love? Would you like to lay in bed crying because you feel so unwell that you can barely move? Would you like to navigate the difficult reality of using a wheelchair instead of being able to walk or run? Would you like to live a life where every decision you make is clouded by the reality that that decision has the possibility to cause you pain, fatigue, or even permanent decline? Is this a life you would choose for yourself? No? Then why do you believe that these young women would?
Whilst it is disturbing that someone would think this way, it is more concerning to me that a major news outlet would platform these ideas to their viewers. The article is riddled with misinformation and vicious attacks to one of the most vulnerable groups in society. It perpetuates cruel stereotypes about disabled people, and feeds into the same sexist, homophobic, and transphobic narratives that we see repeatedly in our society. The idea that someone sharing their life and being open about their struggles, raising awareness, and advocating for a world where they are not discriminated against, leads to exactly that, and they are told that they are trying to influence, or indoctrinate.
It is disappointing, but not surprising.
“A chronically “sick” person does what a chronically sick person is supposed to do: they withdraw from regular life, struggle with previously simple tasks, receive support and condolences, and rarely, if ever, get better”. If you truly care about these young girls, and want us to get better, then you should be joining us in our fight to push for funding, research, and adequate treatment. Instead, they’re telling us that we’re kids faking sick to get out of things and get some clicks online.
She says that “A chronic-illness influencer won’t want to get “better”” and that illness is “no longer an adversity to overcome”. All we want is to get better, but something about this article tells me they don’t really care about us, she even adds “Whether the young patient was ever actually sick is beside the point”.
If no one believes or helps us, we are stuck being sick. It’s pieces like Poppy Coburn’s that sets us back miles in terms of being taken seriously.
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