Randall H. Duckett

The standard meaning misses the reality

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For decades I’ve suffered from chronic pain.

I know how it feels inside my body, how much it affects my attitude, how it impacts every aspect of my life.

But it’s hard to communicate that.

What does “chronic pain” really mean? What exactly is its definition? How can I make everyone understand what I’m talking about?

It turns out the meaning of chronic pain is squishy.

The standard definitions are like that in a book from StatPearls Publishing: “The condition encompasses a wide range of persistent discomfort lasting beyond three to six months and often originates from various sources, including injury, disease, or unknown causes.”

This contrasts with “acute pain,” which is the pain we feel when we hit our thumb with a hammer. Acute pain comes from physical damage, hurts for a short while, and heals.

With chronic pain, however, we are not talking about skinned knees. Phrases like “persistent discomfort” underplays what chronic pain is really like.

Inadequate definition

The simple definition of chronic pain based on how long it lasts is inadequate to capture the reality for sufferers. It belies the genuine desperation people with chronic pain feel.

For me, it’s not simply how long but more importantly how much an individual hurts. Quantity of time is not as critical as quality of pain.

Of course, chronic pain ranges widely in severity from one person to the next. We each have our own pain threshold. Our individual pain is unique to us.

My pain is like a WWE wrestler battering my body each day.

For some people, the horrible hurt is unavoidable, untenable, and unremitting. I’ve seen folks in online chronic pain forums say they don’t think they can go on living with the pain. (If you need help, call the 988 Suicide and Crisis Lifeline at 988, text the Crisis Text Line at 741741, or go to 988lifeline.org.)

Different answers

For this book, I asked dozens of others who have chronic pain to give their best definition of it. Here’s a representative sample of the responses:

“The medical definition misses the bigger picture. There’s not only the physical component, but there’s an emotional and spiritual factor that gets dampened the longer the pain continues. Chronic pain is almost a whole life experience.” — Susan

“Life-altering pain that forces you to change who you are.” — Mindi

“I think chronic pain is any discomfort that you live with that is constant and that your body tries to adapt to. The length of time is less important than the level of pain.” — Roz

“I think chronic pain should be measured day-by-day. I have pain every day, but I don’t have pain all day. I feel lucky in that. But the pain is still chronic. I know that six months from now, I will have pain.” — Brad

“Chronic pain is different for different people, but the best thing I can say is that it is a constant pain that is so bad, it becomes a constant focus and makes it difficult to do even ordinary activities.” — Jim

“I define chronic pain as the pain that sticks around with me all the time. It’s like the weather. It’ll be there tomorrow. It’ll be there next month. It’ll be there next year. I think limiting it to a certain number of months doesn’t really accomplish much.” — Mark

I asked the same question on a Facebook chronic pain support group. Here is a vivid answer:

“Chronic pain = hell on earth. Pain every day. It effects every aspect of your life. Makes you feel crazy. And it never goes away.”

The takeaway from these responses: Chronic pain is far more than pain that lasts for greater than three to six months. It affects everything we sufferers do. It intrudes on our lives. It consumes the core of our being, our sense of self, our identity.

It that hyperbole? Talk with enough chronic pain sufferers and you’ll hear stories of lives interrupted, relationships fractured, and potential lost.

High impact pain

In an effort to better capture the reality of chronic pain, researchers developed the concept of what’s clunkily called “high impact chronic pain” (HICP). (I desperately want to pronounce that “hiccup.”) 

According to a study by the National Center for Complementary and Integrative Health’s (NCCIH) Division of Intramural Research and collaborating institutions:

[HICP is] pain that has lasted three months or longer and is accompanied by at least one major activity restriction, such as being unable to work outside the home, go to school, or do household chores.

The study of HICP by the NCCIH showed some dramatic results:

About 83% of people with High Impact Chronic Pain were unable to work for a living, and one-third had difficulty with self-care activities such as washing themselves and getting dressed.

Compared to people with chronic pain without ... limitations, those with [HICP] had higher levels of anxiety, depression, fatigue, and cognitive difficulty. They [reported] more severe pain, worse health, and higher healthcare use.

HICP is widespread. According to the Center for Disease Control and Prevention (CDC), in 2023:

8.5% of adults had chronic pain that frequently limited life or work activities (referred to as high impact chronic pain) in the past three months. American Indian and Alaska Native non-Hispanic adults were significantly more likely to have chronic pain (30.7%) compared with Asian non-Hispanic (11.8%) and Hispanic (17.1%) adults.

Life derailed

I fall into the HICP category, with my condition causing my life to derail.

At age 53, I had to retire early and go on federal disability (see chapter 4). I lost the working life that was at the core of my identity.

I am mobility impaired. I walk with a cane for short distances and use a wheelchair for longer ones. It’s hard to get out and enjoy life.

I’ve struggled with depression (see chapter 10) and anxiety, which often accompany chronic pain.

My relationships have been affected. My wife was forced into being a caregiver (see chapter 24). She handles that with grace, and I am grateful to her.

Still, carving out the category of HICP is not enough to describe the depth of my pain and that of others I’ve interviewed and read about.

There’s at least one more competing definition of chronic pain. Some doctors see chronic pain as simply that which endures absent of original injury, after physical damage has supposedly healed. For example, according to the Institute for Chronic Pain: 

There is a tendency among patients and some healthcare providers to continue to see the pain as a symptom of the underlying health condition that started it. They think of chronic pain as simply the long-lasting pain of an injury or illness that hasn’t yet healed.

This line of thinking leads to getting a lot of healthcare. Surgeries, injections, and narcotic pain medications are common attempts to reduce pain by focusing on the underlying condition that started the pain. The typical chronic pain patient has had any number of such procedures and therapies.

… Studies of healthcare expenditures show that in the last twenty years the rates of pain-related surgeries, injections, and narcotic pain medications are at an all-time high. At the same time, applications for pain-related disability are also at an all-time high. Obviously, these procedures and therapies don’t work so well. 

Chronic pain has two characteristics that are different from acute pain. First, chronic pain lasts longer than six months. Second, and most importantly, chronic pain is pain that occurs in addition to the pain of the original health condition. In fact, the original, underlying condition may or may not have healed. It doesn’t really matter. Chronic pain is pain that has become independent of the underlying injury or illness that started it all.

My definition

What is the true definition of chronic pain? Let me venture my own:

Chronic pain sucks. It goes on long past the normal time for healing, disrupting sufferers’ lives and making it hard to focus on anything else. It impacts relationships, mobility, and work. It is affected by emotions — and emotions affect it. Living with it requires not just physical treatments but social, psychological, and occupational ones as well. For sufferers, chronic pain endures, entraps, and seems endless.

What do you think? If you are a chronic pain sufferer, have I captured your experience? Does that make sense? 

Toward a common understanding

It is difficult to describe chronic pain if we do not have a common understanding to guide us.

It’s essential that we spread a more precise definition of chronic pain and the impact it has on sufferers. It gets confusing when we sufferers, healthcare providers, media members, and policymakers can’t agree on a meaning that truly captures the experience of chronic pain.

We need a mutual definition to help the tens of millions of Americans out there struggling to live, love, and earn a livelihood.

Let’s get to work.