Aussie musician Sia announced on Twitter a few weeks ago that she’s been diagnosed with Ehlers-Danlos Syndrome (EDS), a condition I also have.
There’s ambivalence whenever you hear that a celebrity shares a relatively under-recognised chronic illness. You hope that they’ll be able to raise awareness for it, secure research funding, get people diagnosed and adequately treated. At the same time, you know those are unrealistically high expectations to put on anyone, especially someone with a painful and exhausting condition.
Sia’s announcement highlighted issues with the way chronic illness is portrayed in mainstream media as well as how it’s treated by mainstream medicine. And yet, the counterpoint narrative – the one that offers alternative, anti-scientific explanations and treatments – is even more problematic. Whichever path you take is riddled with misinformation, vested interests and few opportunities to ease suffering.
As I wrote for The Age, when celebrities announce a diagnosis, it doesn’t always raise ‘awareness’ of that condition. The mainstream media circulated several myths about EDS after Sia’s diagnosis that a quick perusal of Wikipedia could’ve debunked. Even outlets like the BBC and the purported ‘medical information’ website WebMD reported that Sia’s EDS was ‘rare’ (a contested and likely false claim), and that it was neurological.
Chronic illness and media misinformation go hand-in-hand. Think of how many times Chronic Fatigue Syndrome/Myalgic Encephalomyelitis has been presented as the ‘yuppie flu’ rather than the severe and potentially life-threatening illness it is. Or how many times psychotic disorders are equated with the risk of gun violence when the people who suffer from them are at far greater risk of being victims than perpetrators of violence.
The accurate representation of chronic conditions is important. Getting an EDS diagnosis is arduous, and most people with this disease have, at some point, been told there’s nothing wrong with them, or misdiagnosed with a different condition. It takes between ten and twenty years, on average, between the onset of painful symptoms and actual EDS diagnosis.
Once you’re diagnosed, treatment options are both expensive and hard to find. Yet, in this frustrating context, as advocate Asher Wolf has pointed out, clinicians were reaching out to Sia over Twitter, offering their services to a celebrity while doing nothing to ensure better access to treatment for all people with EDS.
Others used the announcement to spread dangerous beliefs about EDS. That it can be caused, for instance, by antibiotics, Lyme disease or the HPV vaccine. They offered ‘advice’ that wasn’t evidence-based, and spruiked multi-level marketing products supposedly capable of ‘destroying pain’.
EDS is a genetic condition where a person’s collagen – which is present in connective tissues through the whole body – is stretchy rather than structuring. There are different types of EDS and many different ways it can affect the body. People with EDS are born with it (so, there’s no known way that illnesses, medications, or vaccinations could cause it), although may not notice the symptoms until they get older.
My first response to anti-vaxxers and others telling Sia that the real source of her disease were toxic ticks and ‘chemicals’ was rage. But reflecting on this state of mainstream medical knowledge has allowed me to have empathy for how people get into these alternative explanations.
They’re still wrong, obviously. Antibiotics, for instance, can’t change your genes. Yet, one class of antibiotics, fluoroquinolones, can have terrible side-effects, including ones not dissimilar to EDS like connective tissue damage and pain throughout the body.
Fluoroquinolones can be lifesaving for people with sepsis or hospital-acquired pneumonia, but many people who’ve experienced terrible side-effects (they call themselves ‘floxies’) were inappropriately prescribed them. They were given them for things like UTIs or sinusitis which could’ve been treated with a safer drug, or for viruses – that don’t require antibiotics at all.
Many floxies responsibly stick to the facts, and rightly point out that these drugs have higher risks for those who already have EDS. But others allow their medical mistrust to spread outright falsehoods, such as the idea that antibiotics can cause genetic conditions.
The same principle holds for Lyme disease, though this is a more complex issue within the chronic illness community. Lyme disease is an infection spread by ticks in forested areas of Asia, north-western, central and eastern Europe, and the US. It can be treated with antibiotics but some of the complications can be long-lasting and serious.
These lasting complications are different though to ‘chronic Lyme disease’ which is a label used by people with any number of symptoms which they believe is attributable to a tick bite, even though conventional tests are negative for Lyme. Under this rubric, pretty much any symptom without medical explanation could be understood as ‘Lyme disease’. Even if the sick individual lives somewhere Lyme-infected ticks don’t exist, like Australia.
It’s likely that people who claim to suffer from chronic Lyme disease are very ill. In fact, one recent report attributed the symptoms to likely CFS/ME. It’s wild to me that EDS can be put under this unscientific umbrella by chronic Lyme believers, but then it’s also likely that they – like floxies – have reason to mistrust mainstream medicine.
Most people who claim to have chronic Lyme are women, who continue to be neglected within the medical system.
While seventy percent of people who experience chronic pain conditions are women, eighty percent of pain studies are conducted on either mice or men, which means that the research we have on how pain affects the body has a gender and species bias which doesn’t reflect what pain is like for those most likely to be affected by it. In 2016, the British Tumour Charity published a report on patients’ experiences of being diagnosed with a brain tumour – the kind of illness that causes seizures, personality changes and fatigue, and that can be readily diagnosed with a brain scan. The charity found that almost one in three of respondents had to visit a doctor more than five times in order to get a diagnosis. Women and patients with lower incomes were more likely to wait longer for a diagnosis. The report quoted a woman who commented:
One of the GPs I saw actually made fun of me, saying ‘what did I think my headaches were, a brain tumour?’ I had to request a referral to neurology. I went back repeated times to be given antidepressants, sleep charts, analgesia, etc. No one took me seriously.
Diagnosing yourself with chronic Lyme – or finding an alternative practitioner who’s happy to take your money and do it for you – exposes you to risky treatments and may mean missing out on the real explanation for your illness. But then, I’ve spent most of my life looking for a diagnosis and being dismissed by doctors. I don’t agree with attributing huge rafts of health problems to Lyme disease, but I understand the inclination.
Anti-vaxxers are the hardest for me to understand. In this case, the theory is that there are suddenly more cases of EDS amongst young women as a result of injury from the Gardasil vaccine that protects against HPV. I’ve followed people with EDS on Instagram who attribute their condition not to genetics but to this vaccination.
It’s insulting to have a condition that’s linked to this movement. I watched my grandfather suffer over my entire life from post-polio syndrome. When he contracted polio as a child, the vaccine wasn’t yet available. Before I was old enough to be immunised, I contracted rubella.
It’s common to say that the anti-vax movement has gained ground because of the success of medicine. After all, if people actually remembered what terrible childhood diseases like polio, or rubella were like, they’d be more interested in protecting their children from them than to promote bizarre theories about vaccines. But how short can people’s memories really be? I got rubella in the early nineties. Outbreaks of preventable diseases have happened intermittently (and now, thanks to anti-vaxxers, more commonly) over the last few decades. As Danielle Moreau has argued, it seems likelier that anti-vaxxers are a product of medical system failure, the way that trust has been eroded in it over time.
Those who are ‘vaccine hesitant‘ can usually be reassured of the safety of vaccines by having an conversation with a medical practitioner. But the medical system often doesn’t make time for these conversations, paving the way for someone who first notices their EDS symptoms after the HPV vaccine (both of which commonly happen around puberty) to turn into a ‘Gardasil Syndrome’ crusader.
As time passes since Sia’s announcement, my anger is giving rise to something more complex. I still think those spreading misinformation are wrong and dangerous but – given the failures of the medical system – it’s not outrageous to seek alternative stories about your condition or alternative paths toward managing it. I just wish there were a story out there that was helpful, and scientifically solid. Unfortunately, it’s very hard to find.