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By Neen Monty,

I haven’t written much lately, because I am sick.

I am not lazy, I do not lack commitment. Or motivation. Or determination.

That is an unfair characterization, an unfair criticism. One that is not uncommon for people who live with chronic pain or a chronic illness.

We are judged to be lazy, exaggerating, malingering, drug seeking. None of it is true.

I am sick. And I am disabled. But I am not just a “chronic pain patient,” as many like to reduce me to. “Chronic pain” is not my identity. It’s not who I am.

However, pain does dictate what I can and cannot do. Every decision I make is influenced and decided by my pain levels. Or rather, how much pain medication I am allowed to utilize.

If I did not have pain, I would still be disabled and sick every day. I never feel “good” in the way that healthy people feel good. I am always fatigued, weak and in pain. And I sure as heck do not choose that. No one would.

We, people like me, need allies. We need people to help us. Because we are too unwell to put 40 hours a week into advocacy and awareness raising. We don’t have that kind of time and energy.

We need people who are healthy to fight for us.

Because helping people who live with painful, progressive, incurable disease should be a given. Helping people who have experienced severe physical trauma and injuries should be a given. People should feel empathy for the ill and infirm. For the injured and traumatized.

Societies are judged on how they treat their weakest members. By this standard, our society is not doing well.

To help, you first have to understand, listen, and believe. You must trust that what we are saying is true.

You cannot be that doctor who “knows better.” The one who makes snap judgements about the woman who walks into the exam room limping, dressed in old clothes, and unkempt. Clearly a hysterical woman with psychological issues.

It’s doctors like that who misjudged me, leaving my serious and rare neurological disease undiagnosed. Because of those four neurologists who judged me, I now must live with constant and severe neuropathic pain every second for the rest of my life.

The insult to injury is that no doctor wants to prescribe opioid pain medication to allow me to manage that pain. To make the pain bearable. To make my life functional.

Had the first neurologist, or even the second one, done their job and diagnosed my disease over ten years ago, I would have had a chance at remission or even reversing the damage. Now? Not much hope of that. I’ll be lucky if the disease is slowed down a tad.

Judgement vs. Empathy

People who have no pain cannot understand what it is like to live with constant, severe pain.

But everyone can show empathy and compassion and kindness — if they choose to.

I don’t receive a lot of empathy, compassion or kindness. I receive a lot of judgement. I receive a lot of trolling.  I have even been stalked.

Recently, when I had a crisis due to pain and forced opioid tapers, several very kind, empathetic and compassionate people reached out to me. Most were physiotherapists, also known as physical therapists. I cannot tell you how much their support and kindness meant to me. I will never forget.

These are some of the best people I have ever had the privilege to meet or chat with. Some don’t agree with my opioid use, and my opioid advocacy. But they still reached out to help me. I am so very grateful for that.

Many people still don’t believe my various illnesses are real. As I said, I went undiagnosed for over a decade because four neurologists decided I was just a hysterical woman.

Turned out I have a very serious disease. It took neurologist number five, and ten years, to get that diagnoses.

That should never happen, but it’s very common. Women are very often ignored, dismissed, accused of exaggerating or being hysterical.

I used to be a gym junkie, nutrition nazi, a super fit person. I did not bring any of this on myself though poor choices. Though people do love to tell me I did.

All I’m asking for is a better quality of life. And less pain.

I advocate strongly for people like me to have access to whatever pain treatments work. I am not pro-opioid. I am pro pain relief.

When I was in crisis, I also received messages from two doctors. One told me opioids do not work for pain, and that I should be ashamed of myself for promoting them. The other told me if doctors are not prescribing, I must be an addict.

Very unkind. They saw a person in crisis and thought that was a good time to attack. I cannot imagine that they treat their patients with respect, kindness and compassion, if that’s the way they treat me.

I am not able to do much work at the moment. I am far too unwell. My colleagues who live with constant, severe pain also have periods like this.

We support each other as much as we can, but we need support from healthier people.

We need allies.

We need people who live with less severe pain to help.

We need healthy people to help.

We need doctors, therapists, nurses and pharmacists to unlearn the crock science they’ve been taught and learn about real chronic pain. All the many types of chronic pain, not just one.

We need them to learn about chronic pain from the people who live with it. Not the people who profit from it.

We need allies.

Neen Monty is a writer and 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.”