A Cautionary Tale: Why Lived Experience with Chronic Pain Matters

By Neen Monty,

I went undiagnosed with a serious, painful, progressive and incurable neurological 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, nurses and physical therapists dismissed me and refused to do proper diagnostic tests, I now live with permanent 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. And that I 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 a functional neurological disorder. I was referred to a psychologist, who I did consult. But my mental health has no bearing on my pain.

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 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 that more doctors, therapists and 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 healthcare professional’s diagnosis will be coloured by your mistake and your misjudgment. 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 on that honestly. Ask yourself honestly.

This is why lived experience matters. Why it is essential in patient advocacy. And why so many advocacy organizations are failing. They don’t understand the problems that those of us 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.

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is rare, but it is very real. The pain is constant. Every second of my life, I have pain.

And the kicker? No doctor wants to treat it.

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

Every doctor I saw 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 recognized 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.”

CIDP is 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.

But I ask you to read and reflect. Ask yourself, honestly. Would you have made that diagnosis? Would you?

Neen Monty is a patient advocate in Australia who lives with rheumatoid arthritis and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), a progressive neurological disease that attacks the nerves.

Neen is dedicated to challenging misinformation and promoting access to safe, effective pain relief. She has created a website for Pain Patient Advocacy Australia to show that prescription opioids can be safe and effective, even when taken long term. You can subscribe to Neen’s free newsletter on Substack, “Arthritic Chick on Chronic Pain.”