Flashback: The Diagnosis Problem

Originally posted August 7, 2013

One does not realise until one gets sick how unbelievably critical a diagnosis is. Not just getting the right diagnosis – of course that is important so you can get the right treatment and get better. But I mean literally getting a diagnosis.

The scary part of being sick is never how you get better. It’s the bit where you don’t know what’s wrong. Where you don’t know if you’re dying; if you’re going to be in hospital for an hour, a night or a month; where no one seems to tell you anything. The bit before the diagnosis.

For most that part is short. You’ve hurt your ankle… the doctor orders an x-ray and then can tell you ‘good news, it’s not broken, just a sprain’.

For some, that part is slow to get started. Particularly with mental illness, or degenerative diseases like Alzheimer’s  or cancer… a symptom here, a symptom there… takes a long time to put the pieces together and make the decision there is something wrong, then usually a few tests and things to confirm a diagnosis.

For others, that part is very quick to get started and takes forever. That’s me. To hospital in an ambulance with half my body numb, 10 days in acute care, 3 months later my very brilliant team of doctors were still not entirely sure what was going wrong in my brain. ‘There’s some kind of an odd… we’re not really sure, but we understand there is something seriously going wrong there, we think it may be a form of migraine…’ 

A year later, still not 100% sure, we’re still going with the migraine story.

The Diagnosis Problem is this: without a diagnosis you’re nobody to anything past the acute care part of the system.

The Diagnosis Problem is this: while freaked out because really brilliant people didn’t know why my brain wasn’t working properly and had no idea how to fix it, I had to deal with a Centrelink Social Worker saying ‘sorry, we can’t arrange any help for you until you have a diagnosis’.

I doubt it would have been any different had the NDIS been in effect.

Got a diagnosis? Excellent, you can get care, you can get support, you can apply for disability support pension.

No diagnosis? You can stay on Newstart and get medical certificates so you don’t have to look for work but you’ll probably need to do a secondary assessment and you’ll still need to regularly attend contact interviews, no assistance available, no care services for you, there’s no support network we can refer you to, we could maybe ask Aged Care if they can do an assessment on you but they would normally only do that in extraordinary circumstances.

Of course, a doctor can’t fake a diagnosis just to fix The Diagnosis Problem. Ethical minefield there I shouldn’t need to delve into.

The diagnosis you get will dramatically vary the kind of support you can get… are you living with your mental illness or disabled by it? Acute or Chronic? A lot of that is the assessment after the diagnosis though, which can and should be repeated periodically.

The ‘Permanent’ nature of a disability is also a challenging diagnosis to make… particularly given that to do so would enable a patient to access the care they need, but may also damage their mental state if you need them to keep thinking they’ll get better (as my army of doctors still do one year in).

As wonderful as it will be to empower people with disabilities to get the care they want how they want (which is how I understand the NDIS) lets not think that it will fix the thousands of people who fall through the system, thanks to The Diagnosis Problem or much more obvious things like homelessness, or that it will fix the many, many other systemic issues that exist and are not being addressed in our health and welfare systems.