Those dealing with a chronic illness have to go to great lengths to be heard, but their symptoms are often dismissed and not believed, says Hannah Vanderheide.
‘Have you tried meditation?’
If there was a single question that I would permanently retire from conversations with strangers, it would be this one (noting that meditation is pretty much interchangeable with any popular wellness therapy in the zeitgeist).
I’m tired of hearing it because, well, it could kill me. More specifically, accepting the implied assertion, that it’s my lifestyle choices keeping me sick rather than a glitch in my genetics, could very well kill me.
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Sound dramatic? Maybe it is, but not by much.
Recently, after experiencing a range of unsettling symptoms, I wondered if I was overreacting. I wondered if I was just ‘overdoing it’, if I should reassess my diet, or maybe I just needed to up my meditation practice because we know how bad stress can be on the body, right? And while I wondered all of these things, Stephanie Aston was dying.
On Friday, September 1st this year, New Zealand woman Stephanie Aston died tragically due to complications from Ehlers Danlos Syndrome (EDS), a chronic, and life-threatening disease that was misdiagnosed as a mental illness, and repeatedly dismissed by the doctors she relied on for survival.
She was 33 years old – the same age as me.
Indifference towards women’s pain and illness is so rampant it crosses socio-economic lines. Recently, women in the public eye have been bravely sharing their experiences, from Bella Hadid revealing her 15-year ‘invisible’ battle to get her Lyme Disease treated, and Bindi Irwin sharing her struggle with undiagnosed endometriosis, having been repeatedly dismissed by doctors.
Michelle Irving, chronic illness mentor, and the Founder and CEO of Career and Chronic Illness says that medical misogyny is deeply embedded in our culture.
“Being dismissed and not believed is so prevalent that I would be hard-pressed to think of a client who hadn’t had this experience – and most people have had it so often that it feels normal,” she says.
“Women are taught to suppress our thoughts, feelings and authentic power, and over-ride our bodies, all in the name of being polite and compliant.”
At this point, maybe you’re wondering what this has to do with strangers asking if chronically ill people have tried meditation/cutting out gluten/ taking ashwagandha upon learning of their illness, and fair enough too. What it comes down to, is our cultural attitude towards chronic or incurable illness.
Unsolicited advice can feel a lot like being dismissed
“Unsolicited advice for people, especially women, living with chronic illness is as prevalent and pervasive as chronic illness itself,” says Irving, who asserts that even when people have the best intentions, what underpins their comments is the belief that there’s something sick people are missing that might just get them ‘well’.
“The reason people assume this is because we have a story of illness that normatively says – you get sick, you may get a bit sicker and then you get well. So, if you are not well yet, there must be something you’re not doing and that could cure you.”
The thing is, those of us staring down a lifelong battle with a mysterious illness are often very open to trying anything that might help.
I have two autoimmune diseases with unknown causes. They are, Graves’ disease and the rarer and much more serious, Addison’s disease.
Now, these diseases don’t play nicely together, and as a result, I recently had a thyroidectomy to gain some much-needed control over the more treatable of the two (Graves). Addison’s is a whole other beast, carrying with it the threat of an ‘adrenal crisis’ that can kill within hours, so when something feels wrong in my body, I don’t have the luxury of ignoring it in favour of renewing my meditation app subscription.
“We would all love to be perfectly well,” says Irving, “and chronically ill people have often gone to greater lengths than anyone could ever imagine. So the assumption, which is often flippant, about something more we can ‚do‘ that will fix things is both discouraging and distressing.”
Worse than being dismissed, is not being believed
It’s easy to assume that the medical system exists in a vacuum, somehow immune to the popular narrative of wellness persisting outside of it.
But what sick people encounter in their day-to-day interactions, often follows them in from the waiting room of the specialist’s clinic.
“Sadly, the outcome of this is that even in the doctor’s office we will be questioning if what we share about our experience is ‘okay’ to express.
The traditional, masculine model of power will dismiss a woman (see long history of hysteria), and all that she says about her body and experience, reducing it to being some ‚feeling or thought‘ rather than an accurate, factual depiction of what is going on.”
There can be deadly consequences
This fundamental misunderstanding of the nature of chronic illness is at best, frustrating for the sick person, but at its worst, it can actually be life-threatening.
It was medical misogyny that killed Stephanie Aston, not her EDS. And it’s something most chronically ill people will rail up against countless times in their interactions with our healthcare system.
It’s a barrier fed by our cultural tendency to dismiss women’s pain until it’s too late. A barrier that is slowly, tentatively being challenged, by more and more women coming forward with their stories, and by the Labour government’s establishment of the National Women’s Health Advisory Council in December last year.
The thing is, we don’t have time for this attitude to slowly die out because while we wait, women are dying. Young women, older women, women with complex but manageable conditions who deserve good care and basic respect.
Women like Stephanie Aston. Women like me.
So, how can we navigate this?
Irving firmly believes that the vast majority of medical professionals genuinely want to help their patients, and as a patient advocate, she has developed a series of ‘golden rules’ she teaches her clients to use when experiencing challenging encounters with the medical system.
“The bottom line,” she says, “ is that it’s not up to the patient to prove we are unwell and telling the truth. It’s up to clinicians to understand we are reporting facts, we have vulnerability, and we need help.”
Two fundamental points she hopes every patient will remember, are that it’s okay for the clinician to be uncomfortable and that it’s not your job to take care of your doctor’s feelings.
“Your clinicians are your advisors, but you are the ultimate decision-maker. Yes, they may know a lot more about your condition and have more medical knowledge than you, but you are still the decision maker, even if your decision is to follow that medical advice,” she says.