I don’t know

Some advice for medical professionals

Artwork by Robin Eames Artwork by Robin Eames

Content warning: this piece discusses medical trauma

Before I got sick, I had no idea how much these three simple words would be a lifeline. It sounds counterintuitive, but having gone from a busy, robust lifestyle to being hospital-bound and bedridden, I have seen a lot of doctors. I’ve noticed that these three words are at the core of what makes a specialised doctor, and what makes a good one.

After having a healthy and physically active childhood, it was not until my late teens that I started to notice signs that my body didn’t function the same way as my peers’. The next few years were littered with unexplained dislocations and severe pain, without any obvious cause or catalyst. This year, I was finally diagnosed with the hypermobility variant of Ehlers-Danlos Syndrome (EDS), a connective tissue disorder. My rheumatologist was the first doctor to ever tell me “I don’t know”. He didn’t let his ego stop him from admitting he didn’t have all the answers. Although he had encountered EDS before, in medical school, he cared enough about my wellbeing to tell me his knowledge was not exhaustive. He committed to educating both himself and his staff, enabling them to provide me the highest possible quality care.

Unfortunately, as if in response to my fancy new label, my body started to shut down. An episode of gastritis seemed to have triggered some underlying illness – suddenly everything that went in to my stomach made me incredibly ill, to the point where I was struggling to consume even 400 calories a day. I had no idea how long a week was, until I had to watch them go by agonisingly slowly, counting down the days until the next available
doctor, or test, or report.

I was starving to death, and it felt like everyone was just watching.

Thankfully, my healthcare team had the courage to admit that they didn’t know, that they needed to escalate the urgency of my care, admitting me to hospital. There, I encountered the other kind of doctor, the one all of us with chronic illness dread. She had never treated me before, never even met me, and yet within the first five minutes of our consultation she firmly stated that she knew exactly what was wrong – my symptoms were entirely psychosomatic. She firmly believed I had somehow thought myself sick. She was not a psychiatrist, she was a gastroenterologist, and this was a conclusion she had reached without anything remotely resembling a psychiatric assessment. Simply because the cause of my symptoms was not immediately identifiable, she had decided it was all in my head. The earliest days of my hospital stay were a traumatising blur of invasive tests, having my mental health
called into question, and being ignored any time I questioned my
treatment plan.

Were it not for the small army of friends and family by my side, I think I would have given in. Instead, they were there to hold my shaking hands, to give me luxury, non-hospital tissues to wipe my tears. They lent me the strength to find myself again through the pain of the treatments I wasn’t tolerating, and through the medications causing me
cognitive dysfunction. They gave me the strength to fight for my rights as a patient. To say that this consultant was not considering all the options, that she was refusing to admit that she might not be right, ordering unnecessary tests whilst ignoring the ones which would give answers. Hindered by her own obstinacy, she was removed from my team, who then contacted my EDS specialist in a last-ditch attempt to find answers.

I am so grateful that they did. When they admitted that they did not have all the answers, they probably saved my life. Well, perhaps that’s melodramatic, what I mean to say is they saved my quality of life. By admitting that they couldn’t find the cause of my symptoms, with guidance from other professionals, they were able to search a little further. We were able to successfully detect gastroparesis; a condition characterised by delayed stomach emptying and often common in EDS patients. Because we caught it relatively early, we were able to start medication with almost immediate results. I was finally able to transition off my emergency feeding tube, and nourish myself independently for the first time in weeks.

If the evidence had actually suggested that my condition was psychosomatic, I would have fully accepted this, as psychosomatic illnesses are indeed real illnesses, with treatments targeting the appropriate brain and nervous system dysfunctions. However my illness was not psychosomatic, and labelling it as such meant obstructing
me from receiving appropriate diagnosis and treatment. This was especially harmful given that I was already diagnosed with EDS, a disorder known to be multisystemic, with well documented gastrointestinal comorbidities.
Unfortunately, I am far from alone in this. Medical students are often taught “when you hear hoof beats, think horses, not zebras” and while this approach may work 99% of the time, it’s important to still consider the 1% of us that do exist with rare conditions – the zebras. Evidence of rampant misdiagnosis of psychosomatic illnesses in the chronic illness community is not only well documented anecdotally, but more recently an article in the Journal of Depression and Anxiety critically analysed the issue, aptly naming the phenomenon “abusive psychiatrisation”.

My team had the courage to stand up and say “I don’t know”. They didn’t let their pride or arrogance get in the way of providing me, their patient, with not just high quality care, but the correct care. They didn’t listen to the consultant who was so outspokenly close-minded, not listening to her diagnosis which almost fit, but didn’t in all the ways that mattered. Instead they persevered, leaving no stone unturned until they found the correct diagnosis, the one which was supported by evidence, and which had a very specific required treatment that I would not have otherwise received.

Doctors of the future, do not be afraid to say “I don’t know”. Do not be afraid to admit that you are not a god, you are not omnipotent, and you don’t have all the answers. We don’t expect you to. What we want you to say, is “I don’t know, yet.”

This article appeared in the autonomous Disabilities edition, Disabled Honi 2018.