Chapter 16: Throw Away The Pain Scale. A New Way To Communicate Pain and Be Heard.
A 41-year-old White woman, a 59-year-old Black woman, a 10-year-old Asian girl and an 83-year-old White man walk into a doctor’s office and say, “I’m in pain.” Which one gets enough pain relief?
Probably none of them.
Pain is no joke. According to the National Center for Health Statistics (NCHS), a quarter of American adults(25.2%) live with chronic pain, and one-third of them have high-impact chronic pain, the type that limits their ability to participate in work or normal life activities. Pain affects more people in the United States than diabetes, heart disease, and cancer combined.
Because pain is universal, you’d expect a simple method exists to measure each patient’s pain accurately so it can be resolved. Well, one doesn’t exist. And there are big problems with the ones most hospitals and doctors use.
That’s why I created The L.I.S.A. Pain Checklist to help you describe your pain in a way that your doctor can use to help treat you. Read on to learn why it’s useful and how to get your free copy.
You Can’t Manage Pain If It’s Not Assessed Properly
How many times have you heard the question, “On a scale of 0 to 10, with 0 being no pain and 10 being the most pain you’ve ever experienced, what is your pain level today?” Despite study after study demonstrating that the numerical 0 to 10 pain scale doesn’t work, most medical practices and hospitals still use it.
There are two major problems with the numerical pain scale:
Pain is highly subjective. “Pain is a multidimensional experience,” states a paper in the Journal of General Internal Medicine. My 10 won’t be yours because my worst experience with pain was when I had back labor giving birth to my son without pain meds. While your worst pain might be from a broken arm or bone cancer or anything in between. The numerical pain scale is only good for reporting changes in your pain levels, comparing your pain today –– with or without treatment –– to your pain last time.
Your doctor must believe your numerical report of pain to treat it. If the doctor or nurse can’t objectively see the source of pain, they may reject the patient’s assessment of it. When pain is a clear symptom of visible damage, like from a broken bone, lacerated skin, or a gunshot wound, treatment is quickly provided. If not, it may be dismissed as being in your head or just not real and so becomes “clinically neglected.” This is considered an out-of-date attitude by academic hospitals and researchers. Yet, many healthcare professionals “still find it challenging to accept pain without a link to pathology.”
For measuring younger children’s pain, the FACES scale, shown below, is commonly used. It has many of the same problems as the 0 to 10 scale for adults plus one more. Despite trying to be a visual version of the numerical scale, it’s abstract. Experts note children can interpret the faces as ranging from happy to sad, rather than as a measure of pain. There are lots of reasons why a kid in the hospital is unhappy.
Ignored Pain Is Stigmatizing
Patients with pain often do not feel listened to or understood by their health care providers. The NCHS study shows more women and seniors report frequent pain than men or those younger than 65 do. Yet, many women and seniors noted their doctors either didn’t ask for their input about their pain treatment or didn’t believe their reports of pain.
Many patients feel scorned by clinicians who dismiss their reports of pain. This holds true for all patients but women, seniors, children, people of color and disabled patients report their pain is routinely ignored or discounted and consistently undertreated. [Note: future chapters will address healthcare challenges for each of these groups.]
I’ve been there. When I was 36-years-old, it took four years for the source of my pain to be properly diagnosed. That’s partly because the first three of those my doctors and specialists doubted my pain was real. One of the top specialists offered to reset me “like a computer” with antidepressants. I’ve never been sufficiently treated. Yet, I’m one of the lucky ones because my pain isn’t crippling. It doesn’t stop me from working or playing or traveling or getting out of bed most mornings (although it often prevents me from sleeping at night.)
If you’re Black, you know that the old racist stereotypes persist; the one that says Black folks feel less pain than Whites do. Yet, several studies prove that Black patients feel more pain than Whites based on objective brain activity studies. Many sickle cell patients are denied essential pain relief by emergency departments because knee-jerk medical racism deems them drug-seeking.
And children’s pain is too often misunderstood. For a child who has rarely experienced pain before, their booboo may be the worst pain ever. Chronically ill children who have daily pain may not share new or increasing pain for a long list of reasons including not wanting to return to the hospital or not being aware of the slow worsening of pain.
I’m still infuriated that my son’s full body deep joint pain in elementary school was officially recorded in his medical records as “growing pains.” It was an insult to his pain and an early clue to his diagnosis that was ignored for over eight years.
Texas Children’s Hospital has a fantastic, thorough guide for pediatricians about communicating with children and families. It mentions some pediatricians still believe that newborns and developmentally disabled children feel less pain than “normal” children do. It may seem obvious but if the doctor believes that any child unable to express pain can’t feel it, that leaves those children locked in their pain.
What Are Your Options To The Numerical Pain Scale?
Researchers have studied several alternatives, but nothing reliable has stuck. We need to find new ways to measure pain that figure out how to include its subjective personal nature. So, of course, some researchers are looking to Artificial Intelligence (AI), the least human but possibly more perceptive path.
In the meantime, I have two suggestions.
In Chapter 7: Top Five Things To Do Before You See Your Doctor, I shared and explained how to use my Eight Characteristics Of A Symptom Tool which can be easily used to describe pain. Download it. It helps you describe your pain in terms that make it easier for your doctor to understand both the factual objective details (i.e., how much pain, where it is, when it started, …) and the subjective ones (i.e., what it feels like and what makes it worse or better).
Chronic pain advocates suggest using highly descriptive words and phrases to report pain. So, I’ve created a guide to help you describe your pain to your healthcare professional: The L.I.S.A. Pain Checklist. Location • Intensity • Sensations • Action (LISA). [No, it’s not named after any of my friends named Lisa.] You can download it here. ⤵️
I’ve used it for years to accurately describe my pain to my doctors and believe it can help you, too. For example, I’ve had post-surgical pain from a knee replacement in 2020. I could do it the old-fashioned way and tell my doctor my pain is a 6 today and point to my mechanical implant or I could say it’s:
Location: Deep inside my knee, localized
Intensity: Moderate
Sensations: Aching, throbbing and crunchy (cause that’s the sound it makes)
Action: Lingering, and sometimes pulsating
I tried the numerical way multiple times, was dismissed and told I was imagining the sensations and sounds. So, I switched surgeons. I tried this new approach and voila; he took me seriously; didn’t dismiss me and I’m scheduled for an exploratory laparoscopic “looky-loo” later this year.
The goal of the L.I.S.A. Pain Checklist is to improve how you communicate your pain with your doctor. You can use it to arm yourself with the right words and phrases for your next appointment. Or, mark it up and hand it to her. Feel free to personalize your word choice. I advise you to be selective and not check everything but if you need to add your own words, please do.
As always, please share your thoughts and ideas with me. Your input is important to me and I can update this anytime.
Next up –– Chapter 17: Why Millions of Kids Are Misdiagnosed and Harmed Annually
©Helene M. Epstein 2025
Thank you for this information. The second sentence in the "Ignored Pain is Stigmatizing" section looks like it might have been a cut and paste sentence. Other than that, everything is very clear, and I downloaded the checklists for future use.
As a person with a disability and chronic pain, this is extremely helpful. Thank you!