photo of patient advocate Angie Ebba with cat
Credit: Angie Ebba

“What is your pain today, on a scale of one to 10?” asks the medical assistant checking me in for my appointment. It’s the dreaded question — the one that makes me squirm, as I never know how to answer.

Years ago when I was first struggling to get diagnosed and was dealing with untreated and debilitating symptoms, I went to the emergency room. My muscles were spasming with such intensity that I was struggling to catch my breath. It felt like I had Charlie horses all over my body.

When the doctor asked me about my pain scale, I muttered between clenched teeth “7.” Meanwhile, I could hear in the hospital bed next to me, separated by only a flimsy fabric curtain, a patient laughing and talking with his family. When the doctor asked him the same question he said “11” — off the charts with pain. Similarly, I know someone who walked around with a broken leg for months, stating she was at a “6.” Her doctors were shocked when she finally got an Xray and they saw the extent of her injury.

A Quick History of Pain

Pain is a natural part of the human experience. It allows us to know when something is wrong, to learn what is and isn’t safe in our surroundings (a young child being burned by a stove learns not to touch it), and is a way for our bodies to communicate to us. However, pain wasn’t always prioritized in the medical field the way it is now.

In fact, while pain has always been of interest to those in the medical field, it is only within the last 50 years or so that the question: “What is your pain on a scale of one to 10?” has become a regular part of doctor’s visits. According to The History Channel, the focus used to be studying pain by causing pain. Studies ranged from poking people with horse hair to measure their pain response to burning the hands of women in labor to compare their contractions to other forms of pain.

In the 1970s, Dr. James Campbell advocated for pain to be considered the “fifth vital sign” (along with blood pressure, breathing, pulse, and temperature), and it soon became common practice for doctors to routinely ask their patients about their pain levels. This not only helps doctors know when they may need to offer pain relief for patients but also gives a way to measure improvement or worsening of symptoms based on the reported number either going up or down with time.

The issue with this, as even medical professionals would agree, is that pain is a completely subjective experience. As Dr. Stephen McMahon tells The History Channel, “[T]here is no objective measure of pain. Pain is a subjective sensation…We can report on it, but we don’t have an objective machine that can assess it.” In other words, what is a “5” for one person may be a “3” for someone else, or an “8” for another.

Why Patients Are Frustrated with the Pain Scale

How does one quantify the headache that has gnawed at the edges of your reality for months now? How does one give a number to a pain that has become part of your everyday existence?

As I wrote in a poem early in the stages of my illness:

“My doctor asks what is my pain on a scale of one to ten,
and I cannot determine what number is
glowing orange comet between my shoulders
or shimmering red flames dancing just beneath my skin.”

Personally, I get frustrated every time a doctor asks me to give a number to my pain. Different types of pain feel different to me (for example, “stabbing” pain is less consistent for me but more intense, while “aching” pain is nearly constant but more bearable).

Where the pain resides also is important. Pain in my back may be excruciating, but I can usually deal with it, while pain in my head will completely debilitate me. Outside things influence my pain; if I’m feeling exhausted or dealing with sensory overload, my pain feels more acute. Most noticeably for me, my pain tolerance has increased the longer I’ve lived with chronic pain. What used to be an “8” for me on a pain scale is now a “5”. This isn’t because I’ve gotten better — I’ve simply  gotten better used to the pain and better at dealing with it daily.

Heather S., who lives with chronic migraine, told me that she experiences a similar frustration. “What I consider a “3” now used to be an “8” but I got so used to it that it got downgraded,” she says. “There’s also a sense of ‘this medical professional won’t care unless I’m at XX and won’t believe above YY,’ which inherently skews the data. And don’t forget that if you know it could be worse, using ‘10’ feels like a mistake because how do you communicate when it goes above what you’d previously called 10?”

Another patient, Liz B., who lives with numerous conditions including ankylosing spondylitis, shared a similar sentiment. “My pain tolerance is higher for dull aching pain than for sharp or burning pain. And even within dull pain, bad gas cramps feel different than when my back seizes up for a few weeks.”

A New Pain Scale for Chronic Pain

It makes sense that the medical field wants to be able to quantify and measure pain. Pain is an important indicator of illness, injury, and disease. However, like so much of our experience in these corporeal bodies, pain is elusive, mercurial, and not something that can be pinned down or encapsulated in a number. Trying to give a number to my pain makes me feel like I’m minimizing the experience of what pain really means in my daily life.

“[F]or people with chronic pain I think that there should be an entirely other type of pain scale because what would be unbearable to some people is every day to us,” Prin P., a patient living with Ehlers-Danlos syndromes (EDS), told me. “Pain is such an extremely subjective thing that it is really ridiculous to have a supposedly universal scale.”

As someone with multiple chronic conditions, I’ve had to accept that pain is a part of my life. It is with me — from when I wake up to when I fall asleep — in varying degrees of intensity. The important question for me isn’t if I’m having pain (or how much pain I’m having), but how that pain is impacting other aspects of my life.

  • Has pain made it so I had to cancel plans?
  • Has pain stopped me from doing my dishes?
  • Has pain shortened my patience so I’ve been snapping at my teenager?
  • Is my pain mellow enough that I’ve been able to go out and socialize?

For me, if a doctor asked questions like “How is pain impacting your daily activities?” or “How is pain affecting your relationships with others?” it would be far more helpful and may actually get to the heart of what I’m experiencing.

While a pain scale may be a good measure for acute injuries or people experiencing temporary conditions, for those of us with chronic illnesses, it would be helpful for medical professionals to look beyond if and how much pain we’re experiencing. Instead, they need to start asking us about how pain is impacting us, so that we can work together to find solutions that make our daily lives easier and more manageable with pain.

Become a Patient Advocate

One of the best ways to help people understand the challenges of living with a chronic illness is to raise your voice by becoming a patient advocate.

The 50-State Network is the grassroots advocacy arm of the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to raise awareness, share their stories, and proactively connect with local, state, and federal health policy stakeholders. Learn more here.

How Our Culture’s Thinking On Pain Has Changed Over The Last Five Decades. NPR. March 2019.

Little B. The Torturous History of Trying to Measure Pain. The History Channel. November 2019.


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