My Story: How Do You Explain Chronic Pain to Someone Who Doesn’t Have It?

Editor’s Note: Angelika is a former IT specialist who worked in the Silicon Valley who is disabled from chronic pain and fatigue from Ehlers-Danlos Syndrome and Fibromyalgia. She lives with her husband and various four-legged children in the Santa Cruz Mountains.

I was talking with the editor of the National Pain Report about the difficulties pain patients are having in getting access to opioids when I realized that a big part of the problem is that people without chronic pain don’t understand how devastating it is to live with.

He suggested, “Great, write about that!”

I’ve found that people who don’t have experience with it seem almost incapable of understanding chronic pain.

It is understandable.

Chronic pain is a permanent discomfort that some of us have to endure for no reason, and completely undeserved. We live it, but we don’t even understand it ourselves, so how can we expect anybody else to?

How can we expect doctors and other well-intentioned people to allow us access to drugs they believe are dangerously addictive if they can’t understand the unrelenting torment of chronic pain? Why should they prescribe us powerful opioid medications when they don’t understand how critical their effective relief is for us to enjoy even the most basic quality of life?

Many of us, myself included, have not been able to explain our chronic pain to our loved ones and dear friends, not to mention our doctors or coworkers.

Everyone suffers some pain in their lives from injuries of various severity – it’s an inevitable hazard of living – and this is usually a person’s only reference point for the experience of pain: it is caused by an injury, it hurts for some time, and the pain fades as the injury heals.

Not so with chronic pain.

It’s unnatural to have pain without an injury, it’s unnatural not to heal and get better, but this is exactly what chronic pain is and does. Its persistent, pervasive, and permanent nature is almost incomprehensible, even to those of us who live with it.

We are expected to “get better”, and people seem to lose patience with us when we don’t. Often we can’t even explain why it hurts, just that it does, and this lack of a clear reason seem to invalidate our experience in others’ eyes.

We live in a visual, evidence-based culture. The same doctor that is willing to prescribe us loads of pain medication for a broken bone or after surgery becomes unsympathetic when our pain isn’t visible.

If there’s no evidence of some bodily damage or injury, people seem more willing to believe we’re making it up or imagining it. They become suspicious of our motives. To them, our incapacity seems like a built-in excuse to get our way, and this provokes resentment.

To overcome these obstacles, we must find a way to explain our suffering in a way others can understand.

What is it about the particular torment of chronic pain that makes it so much worse than acute pain? What is the difference between the pain from an injury and pain from central sensitization? I’ve struggled for decades to explain these and other aspects of my pain.

How do YOU explain your chronic pain to your loved ones, health care providers, your employers and coworkers or other people you meet?

Let’s start a conversation!

We’ll publish some of the comments in the days and weeks to come.

Angelika blogs on chronic pain and illness at EDSinfo.wordpress.com.

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