Hannah Gibson has been living with chronic illness for most of her life. So why does she still struggle to get medical professionals to take her condition seriously?
Before I found my current GP, I always had the urge to censor myself went I went to the doctor. To make my story palatable, less daunting. To put the doctor at ease. This was the result of 22 years of learning the culture of biomedicine, gaining an understanding of the kinds of illness or presentation of symptoms many doctors (note, not all) prefer to hear about. I don’t make up symptoms; any time I have come to a doctor’s door I have genuinely needed help. Which makes it all the more painful when a doctor’s eyes glaze over as they mentally clock out, wishing they had a different version of sickness in front of them. I can see when they get excited at the prospect of seeing something unique, and I even see their frustration when they can’t diagnose me easily.
I think my shame around medical professionals began in a doctor’s office at age 10, where I went for help for the severe fatigue, pain, migraines, constant nausea and vision impairment – among other things – that I was experiencing. I always blame my need to say ‘sorry’ on being Scottish, on being brought up by an Irish Catholic family. ‘I was born feeling shame,’ I joke to friends. But I think it began in that doctor’s office. After testing for things that I did not have, he told me if I just ‘pulled my socks up’ I’d be fine. I genuinely felt incredibly ill and my mother, a nurse, was concerned. I just sat there, confused and feeling like I should apologise for taking up the doctor’s time with my complaints.
I have medical conditions that are identifiable by Western scientific testing measures. And I appreciate the influence these tests have (or perhaps I’m infuriated – there’s a thin line between love and hate) more than other people because I also have medical conditions that do not fit into nicely square boxes that can be labelled ‘simple’, or even ‘legitimate’.
I call a ‘condition of legitimacy’ one which is treated as if the complaint is not the patient’s fault. When you present with a condition of legitimacy there’s more empathy, more recognition, more respect.
The opposite happens when a doctor is presented with a condition that is not common or easily figured out, or has yet to have scientific explanations (think of all the conditions that have only become legitimised relatively recently, once they were identified – like multiple sclerosis or epilepsy). Too often, the problem is treated as if it is the patient’s fault. At first attempts might be made to find the cause or provide relief, but if the patient does not respond – or is termed ‘a mystery’– the medical profession’s interest levels tend to lessen.
Recently there has been a jump in stories of New Zealanders with complex chronic conditions like Ehlers-Dahnos, fibromyalgia, chronic fatigue syndrome/ME and endometriosis who are being treated like their symptoms are fictitious. The word ‘psychosomatic’ is bandied around, a triumphant cry that doctors use when they mistake a complex case as something that is ‘an invention’, ‘attention-seeking’ or ‘laziness’, simply because it doesn’t fit into the neat categories that biomedicine holds so dear. I know doctors want to be able to diagnose problems, but I worry that too often when things are challenging they brush people off.
But calling someone living with chronic fatigue syndrome, fibromyalgia, dysautonomia, and other complex conditions ‘inventive’ or ‘factitious’ doesn’t actually make the problem go away. The pain stays; the fatigue too. And the frustration and feeling of being utterly alone increases, because many of us are brought up to believe in our doctors. I know it’s a big ask – but please, doctors, treat our suffering with more respect.
Trust me, there is little worse than sitting in a space where others devalue your experience and suffering. For Māori, the value of an experience is judged differently to that of Pākehā. I count myself lucky that I am not Māori and dealing with disability. Older people are sometimes trusted less because of their age. There are countless women – both friends and those I’ve met in my research – who have been belittled when they go to the doctor with abdominal pain. And as for those who live with mental illness, we read of so many people falling through the cracks.
I know there are amazing doctors out there. Some of them listen, and are dedicated to trying to figure out what is wrong. And when they can’t, they keep going. They empathise. They care. And it is these moments that have the power to make patients feel heard and valued. For me, being heard – really heard – has had as much of a positive impact on me as getting the actual diagnoses. I know this because the times when some specialist has made particularly distressing comments that belittle me or my body, I have struggled with feeling unworthy of medical care.
If I could speak directly to all doctors, I’d beg them: Please see each patient as a human being who is there for your help, who might be suffering – and understand that what you say will impact on whether they come back, whether they tell their family to come back. Don’t think about the colour of someone’s skin before you even ask what their ailment is. Don’t look at a long list of symptoms as something suspicious or too difficult to address. Don’t dismiss older patients who require your attention and respect. Be the point in a person’s journey where they are cared for and valued, regardless of the symptoms you are presented with.
Yes doctors are most likely overworked. Yes they probably have too much paperwork. Yes, it’s bloody challenging. But doctors choose this profession, and are in a privileged position – I want them to be empathetic rather than superior. And when they don’t know something, I want them to be honest and seek the answer.
Medical professionals would do well to realise that patients are trying to take control of their health journeys. They want to know more about their bodies and what it means – so, doctors, if it seems like a patient knows too much about their problem, please don’t belittle them. Knowledge is not just there for you to share.
And if you are one of the good doctors, thank you. But you need to help to effect change too. By working with other doctors, specialists, nurses and counsellors, you can encourage the medical profession to move forward, becoming a better ally for patients – no matter their symptoms.