“What’s wrong with you?”
This kind of questions bring a few problems. It can be pretty hurtful to be defined by a perceived fault in yourself. It is exhausting when every stranger you meet acts out a right to a full recount of your medical history. It is frequently a precursor to well meant but usually useless suggestions for a cure.
It also brings a whole separate kind of pain to a huge number of people with chronic illnesses. Why?
We don’t know.
That is, despite many appointments, tests, and specialists, we don’t know what is making us sick.
For me, that is six specialists over the last year, aside from my regular visits with my GP, physiotherapist, and exercise physiologists. This week alone I will be seeing at least seven medical professionals. I’ve been sick enough to need accommodations for over five years now, but we still don’t really know why.
There’s a few diagnosis that we’re pretty sure of: hypermobility, chronic fatigue, fibromyalgia. We’ve gone through a few others, like post-viral fatigue, heavy metal toxicity, and mixed connective tissue disease. And there are still others that doctors have suggested but it’s not quite clear whether I have a diagnosis or if I have to see yet more specialists for that.
So asking what is wrong with me is a pretty loaded question.
And it’s not just the frustration of being sick for five years without an explanation that is upsetting.
When I decided to look for help at the start of this year, I learnt a hard lesson. Most government support services are designed to discourage people from accessing them. Especially people who do not have complete explanations for their disability.
So when I finally let go of my part-time job on the advice of multiple doctors, I found myself on the Department of Human Services website. From the eligibility basics it seemed pretty simple. There was no way I could work for more than 15 hours a week at or above the minimum wage, and since I’ve been on the decline for five years, little hope that I will be able to in the next two years.
But then I came across this:
“Your medical condition must be fully diagnosed, treated and stabilised to be assessed for Disability Support Pension.”
Treated? Yeah, we’ve tried every widely accepted treatment and a few less so. And quite a few have just made things worse.
Stabilised? I think I would describe it as an acutely fluctuating symptomology on a stable decline. Does that count?
Lack of clear diagnosis is isolating in many ways, but this kind of official obsession with naming things is incredibly harmful in a world where diagnostics just isn’t that simple. For most conditions there isn’t a magic test that will say what is going wrong.
House MD doesn’t exist for people with complex illnesses in the real world. In the real world, you get shuffled from doctor to doctor because none of them are quite the right specialty, or you are simply placed in the too hard basket. It’s not even because the doctors are bad – a lot of them are incredible! It’s that our system simply doesn’t know how to cope with complexity.
For most chronic illnesses, symptoms are in a constant state of flux. Medications introduce new side effects which frequently change the longer you are taking it, and then withdrawal brings its own set of symptoms. Then there is the fact that many chronic illnesses leave you more likely to develop subsequent chronic conditions. That means that your new symptoms might not be symptoms of the original condition, or even anything more than side-effects of one of your treatments.
Many individuals spend years waiting for a diagnosis. Even for something as common as endometriosis (1 in 10 women have it) the delay in diagnosis is upwards of seven years.
Clearly the expectation that someone who is too unwell for mainstream employment either know “what’s wrong with them” or be “bludging” is flawed.
So happy Undiagnosed Disease Day. And remember that a person doesn’t need a diagnosis (or need to share it with you) in order for their experiences to be valid.