Complex, poorly-understood medical conditions: A working definition

Many illnesses are complex, and too many health conditions – especially those primarily affecting cisgender women – lack the research funding that could unlock answers and reveal treatments. However, if I may butcher that oft-cited adage from George Orwell: many illnesses are poorly understood, but some illnesses are more poorly understood than others.

What do I mean when I talk of ‘complex, poorly-understood medical conditions’? Essentially, these are medical conditions which cause physical, bodily symptoms (which can be severe), but for which there is currently no accepted biomedical explanation. People with these conditions may find that test results repeatedly return ‘normal’ results – or that the abnormalities found on medical tests cannot explain all of their symptoms. They might receive a diagnostic label (placing their symptoms under acronyms including ME/CFS, FND, or IBS, among many others) or they might be left without a diagnosis. They may be told that their illness is ‘medically unexplained’, or that their symptoms are ‘functional’; they might be made to feel as if their symptoms are not genuine, or that their illness is all their fault. They might be told that their symptoms are psychosomatic, or the result of anxiety – but these explanations feel like an invalidation because they do not accurately reflect their lived experience. They might feel that their illness is seen as less real, less serious, because it lacks a distinct diagnostic biomarker. They might feel alone, misunderstood, misrepresented.

For example, someone who regularly experiences seizures – excruciatingly painful whole-body spasms – but whose MRI comes back clear and who is dismissed and disbelieved by neurologists, might think of their illness as complex and poorly-understood. So might someone who experiences severe gastrointestinal symptoms but who receives no answers from medical testing, and who is desperate to know what is really happening inside their body. I’m interested in hearing a broad range of stories from those who feel that this description of complex, poorly-understood medical conditions fits with their own experiences.

Does this working definition resonate with you? Would you perhaps have preferred other terms, or a different phrasing? Feel free to leave your own thoughts in a comment below – and if you identify as a woman, and you would be interested in taking part in an interview with me as part of my PhD project, you could also fill out this survey.

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