Chronic Pain and the People Who Cannot Describe It

What happens when someone is in pain but can no longer tell us? A week of nerve pain has forced me to confront that question.

For most of the last six years I have lived with Progressive Supranuclear Palsy (PSP). Like many people with chronic illness, I have become accustomed to discomfort. Fatigue, balance problems, swallowing difficulties, loss of independence and a long list of frustrations have gradually become part of everyday life. They are unwelcome companions, but familiar ones.

For the last few days, nerve pain suddenly became the centre of my world as my leg was invaded by severe pain. It occupied my thoughts during the day and interrupted my sleep at night. It narrowed my focus and demanded my attention. The medication is beginning to work now and I hope the worst is behind me. But the experience left me thinking about a subject that, if I am honest, I had never fully understood before.

I thought I understood pain.

I now realise that I understood discomfort far better than I understood suffering.

Suddenly many of the problems I usually complain about seemed smaller. I found myself longing for what I would previously have described as a bad PSP day. I would happily have traded the pain for the wheelchair, the fatigue, the balance issues and the countless other challenges that normally dominate my attention.

It reminded me of the old story about the man who complains that his house is unbearably crowded. The rabbi tells him to bring a goat into the house. A week later, driven to distraction, the man returns. The rabbi instructs him to remove the goat. Suddenly the house feels spacious. The lesson is usually about gratitude. This week I found myself thinking about it differently.

This week, pain had become my goat. It crowded out everything else. Experience has taught me that it will probably not be the last goat that PSP introduces into my life.

Yet the most important lesson had nothing to do with me.

As the pain began to ease, I found myself thinking about people who live with chronic pain every single day. Not for a few days. Not during a temporary crisis. Every day. Every month. Every year. I have always felt sympathy for people living with chronic pain. This week gave me something more than sympathy. It gave me a glimpse, however incomplete, of why pain can become the organising principle around which an entire life revolves.

But even that was not what affected me most.

What affected me most were the people who cannot adequately communicate their suffering.

When the pain struck, I could tell my wife and live-in carer where it hurt. I could describe the intensity. I could explain what was helping and what was not. I could ask for medication. I could advocate for myself.

That ability is a privilege.

Millions of people do not have it.

Some are living with dementia. Some have experienced strokes. Some have advanced Parkinson’s disease, PSP or other neurological conditions. Some have lost much of their speech. Others are trapped behind bodies that no longer cooperate with their minds.

At first, I thought my reaction to this was simply empathy. On reflection, I realised there was another reason it stayed with me.

PSP is a progressive disease. The people I found myself thinking about are not entirely strangers. They represent a potential future that many people living with neurological diseases worry about, including me.

What happens when those people are in pain? What happens when somebody knows something is wrong but can no longer explain it? What happens when suffering is mistaken for confusion, agitation or difficult behaviour?

I do not know the answers. But I suspect it happens far more often than we would like to admit.

We tend to focus on what we can see. We notice wheelchairs, walkers, tremors, falls and physical decline. Pain is different. Pain is invisible. Fear is invisible. Frustration is invisible. Loneliness is invisible. And yet these unseen burdens may be among the heaviest a person carries.

I have often written about dignity. Perhaps dignity begins with recognising that silence does not necessarily mean comfort. Perhaps it means remembering that there is always more happening inside another person than we can observe from the outside. Perhaps it means understanding that when communication fades, humanity does not.

If pain taught me anything this week, it was not resilience or courage. It was empathy.

Empathy for those who live with chronic pain every day.

Empathy for those whose suffering is hidden from view.

Empathy for exhausted caregivers trying to understand what their loved ones can no longer easily express.

And most of all, empathy for those who cannot tell us they are hurting.

They may be the people who need our compassion most.

And they may be the people least able to ask for it.