Why lived experience matters - Chronic pain, diagnosis, and a cautionary tale

Some of my work is meant to be a cautionary tale.

I went undiagnosed with a serious, painful, progressive, incurable disease for over a decade because nearly every healthcare professional I saw assumed I was a hysterical woman with a low pain tolerance.

I am not that stereotype. I am the opposite.

Because doctors, GPs, neurologists, rheumatologists, and also nurses and physios, dismissed me and refused to do proper diagnostic tests, I now live with permanent, progressive disability and unrelenting, severe pain.

Had I been diagnosed by the first neurologist, the second, or even the third, I would have had a good chance at remission. At not being disabled. At not being in pain for every second of the rest of my life.

Early treatment leads to better outcomes in most diseases. Mine included.

It was assumed that the pain I was describing was from my rheumatoid arthritis. But, because my bloodwork showed no inflammation, it was assumed that I just had a low pain tolerance. Was a bit hysterical. A bit of a malingerer. A bit of a pussy.

Never assume.

NEVER once did they consider I was telling the truth about the severe neuropathic pain I was experiencing.

I was fobbed off by every doctor. I was told I had everything from plain old run of the mill anxiety to functional neurological disorder. Always referred to a psychologist. Whom I did consult, and my mental health has no bearing on my pain, by the way.

These diagnoses were wrong. Dead wrong. And very harmful.

They made assumptions based on a stereotype I do not fit. They made snap judgments. They failed to do their jobs.

And the price was my life. The quality of my life.

Doctors talk about the fear of making a mistake that kills someone. But they never seem to consider the damage they do when they don’t kill you. When they condemn you to a life of unrelieved, preventable suffering. They never consider their bias, their laziness, their ignorance, might steal someone’s future. Condemn someone to a lifetime of disability and pain.

Never. Even. Considered it.

But that’s what happened to me.

I am not posting this because I am bitter. I do not dwell on this. I get on with my life, I make the best of what I have.

But my story is important.

It is a very important cautionary tale. Something more doctors and physios, and all health care professionals, need to consider. Your mistakes can ruin lives. If you misjudge someone, if you get it wrong, you might be destroying someone’s future. If you write on their file that they are hysterical or a hypochondriac, or an addict, every future health professional’s diagnosis will be coloured by your mistake. Your misjudgement. You ARE condemning the patient, and you are preventing them from receiving the care they need.

My lived experience is a warning.

Read my story and ask yourself, honestly, would you have made that diagnosis? Would you have missed that diagnosis? Do you listen to your patients? When treatment fails, do you go back to first principles, start from scratch and look for an alternate diagnosis? Or do you decide the patient is lazy, non-compliant, hysterical, or lying?

Do you blame the patient?

Reflect honestly. Ask yourself honestly.

This is why lived experience matters. Why it is essential in advocacy. And why so many advocacy organisations are failing. They don’t even understand the problems that those of use who live with severe pain face. They speak about us, but not for us.

So please. Read. Reflect. Ask the hard questions.

Because it’s not just about life or death.

It’s about the life someone has to live after you get it wrong.

I could have had a normal life.

I didn’t have to be this disabled.

I didn’t have to be in this much pain.

But by the time anyone took me seriously, my disease was long-standing. Entrenched. Irreversible.

The pathology reports call it a “significant disease.” Sounds harmless, doesn’t it?

It’s not. It’s severe. It’s painful. It’s constant. Every second of my life. Pain.

And the kicker? NO DOCTOR wants to treat this pain.

No one believes it can be that bad. Not friends. Not family. Not doctors.

If you’re wondering…what is this horrific disease?

It’s called CIDP. Chronic Inflammatory Demyelinating Polyneuropathy. Yes, it’s rare. But it is real. And it should have been recognised.

Every doctor I saw, and the physios too, may not have known exactly which neurological disease was causing my symptoms. But they should have known it was a neurological disease they were looking at. They should have recognised the red flags. They should have followed up.

Instead, they saw hysteria. They saw hypochondria. They saw a woman who was “overreacting”. A woman with “health anxiety”.

Normal CBC means there couldn’t possibly anything else going on, right?

But it was CIDP.

And it’s a horrific disease. It has stolen my life. And it didn’t have to. I am 54 years old. I have been in pain for almost 20 years now. I live with significant disability. It did not have to be this way.

Again, this is NOT ABOUT BLAME. I am not bitter.

I am asking you to read. To reflect. Ask yourself, honestly. Would you have made that diagnosis? Would you?

My work is available for free. But if you are able, please consider subscribing to a paid account. Every cent is devoted to my primary advocacy goal of Guidelines change. The current opioid guidelines are out of date and are NOT evidence based. We need new guidelines, based on recent science. Thank you.