Shall I Start From the Beginning?: A Guide for Medical Professionals Working with Patients with Complex Conditions

Written by Hannah Siden

I never thought I’d be writing this – but as we all know, life doesn’t always go to plan, and sometimes you get curveballs thrown that you didn’t see coming. Chronic, complex illness was my curveball. I have a diagnosis of hypermobile Ehlers Danlos Syndrome, which weakens the connective tissues in my body. I also have a heart arrhythmia, and most recently was hospitalised for a spontaneous spinal fluid leak.

I went from working as a yoga teacher and actor abroad in London, UK, to back home in Vancouver, BC, currently bed bound and unable to do many basic things myself. It has taken me a long time to come to terms with what this means, and I am still doing so. As might be expected, some days are better than others.

During this time, as I grew progressively sicker and searched for a diagnosis, my twin sister attended medical school at UBC. We’ve gone through much of the journey together, learning from and supporting one another.

Here, I aim to draw upon my experience and to share some insights that my sister and I have gained by travelling this complicated path. I hope that other medical students find value in it as well, and that it might encourage this new generation of medical professionals to further empathise with and advocate for their complex patients.

(Please note, I am writing this article from my particular perspective so not focusing on chronic/ complex mental health disorders, although that is of course worthy of exploration as well).

  1. Recognise that many patients may come to the appointment with some amount of trauma due to past negative experiences, and that it is often an act of courage for patients to open up to or trust new doctors.
  1. Listen to patients with the assumption that they are telling the truth. If you trust your patients, it will help them to trust you. Recently I did a water deprivation test in the hospital, and one of my sample results came back with an unusual number. Instead of questioning why the result was unusual, the medical team mistakenly assumed that I had something to drink (despite my following instructions not to drink). I had to work to convince them I hadn’t. Their initial assumption, based upon not trusting my account, was not only incorrect – it was potentially dangerous. Trusting your patients demonstrates respect. It will also help you to provide effective and ethical care.
  1. Realize that you and your patient are on the same team. You are collaborators, not antagonists. While you might be an expert in your medical field, they are the authority on their own body and experience. Their knowledge of how their body feels, reacts, and changes is expert knowledge in its own way, and they collect it every day over a lifetime. It is how you bring your two ways of knowing into harmony that matters.
  1. “When you hear hooves, think horses, not zebras” is a useful phrase, but only until you rule out the horses. Once you’ve ruled out horses, consider the zebras. They do exist.
  1. Do not immediately discount research your patients have done themselves. It can help to imagine being in their shoes, dealing with unexplained symptoms every day and possibly with a condition that many doctors they see do not understand, or may not have even heard of. I have had doctors go on Wikipedia in front of me to look up my diagnosis. So unless you are a preeminent expert in their condition, approach the issue with some humility. You can always ask your patient why they came to that conclusion or what symptoms they have that lead them to consider it.
  1. Understand the limits of your own knowledge and be willing to acknowledge it. For patients with persistent, as of yet unexplained symptoms, it is usually much more helpful to hear “I don’t know but a) I will do some research or b) I can help refer you elsewhere” instead of “there is nothing wrong with you.” Certainly, “I don’t know” is also better than a misdiagnosis.
  1. Even if you are a specialist rather than a generalist, consider how a particular symptom might fit into the larger, systemic picture. The medical system is not set up for complex, chronically ill patients. It is fractured between various specialties, which do not always communicate well with one another let alone with patients. For patients with complicated, systemic conditions, this can be frustrating. Help us by coordinating with and learning from other doctors on our case and communicating this information to us.
  1. The mind-body relationship is important and it can be of value to offer psychological help. However, if you don’t know a diagnosis, do not simply assume your patient needs a psychologist. A psychological diagnosis needs to be carefully considered and is not a “catch-all” for complex problems.
  1. If you are going to suggest meditation, yoga, eating well, etc., have actual resources to recommend. Nutrition, sleep, meditation, and movement are vitally important and often don’t get enough emphasis in western medicine. That said – patients with complex, chronic illnesses will almost certainly have tried these things before, to one extent or another. You can help by avoiding vague recommendations and ensuring that you have actual resources to suggest, such as organisations, websites, or referrals to practitioners such as physiotherapists, nutritionists, or sleep specialists.
  1. If you undertake a treatment, even a simple one, without first telling the patient what it is, you are breeding mistrust and potentially violating ethics. I was being admitted to the ER a year ago with persistent tachycardia, which turned out to be an arrhythmia. Despite having no other signs of a panic attack I was given a strong sedative without being told what it was, on the presumption that my symptoms were anxiety. It wasn’t anxiety – my heart rate stayed in tachycardia, but I grew more wary of trusting the medical team caring for me, which was a loss for us all.
  1. Be mindful of possible implicit bias based on factors such as gender, age, race, religion, sexuality, weight and economic status. I know you’ve heard it before, but it is always worth holding in your awareness. From nursing unconscious hangovers from the age of diagnosing women with “female hysteria,” to assuming weight is the cause of symptoms, to being more reluctant to give black and Hispanic patients pain medication – studies show implicit bias is still alive and kicking in the medical system.
  2. Make time for an empathetic, human connection. While I was in the ER during COVID, my doctor had a picture of his face on a lanyard around his neck. When we first met, he sat down to be at my level and then took the time to look me in the eyes and hold the lanyard up so I could see who he was underneath his mask, before speaking to me. It was a small gesture, but meant so much under the stressful circumstances. Striving to work from a place of common humanity is perhaps the simplest yet most crucial point. Certainly, it is the best place to begin.

Complex and chronic illness can be devastating for patients, and now with post-COVID-19 syndrome the topic is increasingly pressing. Medical care for these types of conditions is uneven and often infuriatingly ineffective. But it does not have to be this way. The more that medical students and practitioners learn about working with complex conditions ethically and compassionately, the brighter the future will be.