I don’t have many memories of the two days I spent in the hospital following my double mastectomy last year. But one that does stand out is me repeatedly begging the nurses to do something about my worsening, unbearable pain.
Every half-hour they would ask me to rate my pain on a scale from 1 to 10. After telling them “7” and asking for medication, I waited for over an hour for someone to bring it.
When a nurse finally came in, I asked her about it. What she said next would haunt me for months:
“I thought you said your pain was only a seven.”
Only a seven! “Well, it’s a nine now,” I managed to say.
The medication eventually came. But by the time it did, my pain had spiraled out of control and it wasn’t enough.
My experience was unusual in many ways, and it happened following a major surgery. But many people, especially those dealing with chronic pain, struggle to get their medical providers to take it seriously, investigate it, and treat it.
I wrote this guide to help you advocate for yourself when talking about pain with your doctor. Here are some ways to make these conversations easier:
No, I don’t mean the angsty journal you kept as a teenager. (Although those aren’t a bad idea either.) A pain diary is basically a symptom log — but the main symptom you’re tracking is pain.
Tracking your pain levels can provide helpful context to your doctor, helping them identify patterns and understand how your pain impacts your life. And if your appointment happens to be on a low- or no-pain day, your diary can show your doctor that the pain is still a problem even if you’re not expressing it right at that moment.
You can keep a pain diary on paper using any number of different formats. This is a great spreadsheet that also includes helpful info on how to identify and record pain.
You can also use an app. Apps can send notifications to remind you to make an entry. They can also track patterns for you and export your data in a convenient spreadsheet to take to your doctor.
Try a few and see which one works best for you!
It can be really difficult to find the language to describe physical sensations, and you’ll probably never find a word that seems to fit perfectly. But learning more about the different words your language has for pain can help you communicate more effectively. It can even help your doctor diagnose the cause of your pain.
Here are some words commonly used to describe pain. Make a note of which ones resonate with you:
For more resources on how to communicate what pain feels like to your doctor, check out some of the links at the bottom of this article.
Medical professionals sometimes take pain more seriously when they see that it’s impacting your ability to work, maintain relationships, care for yourself, or have an acceptable quality of life.
Does your pain reduce your ability to focus on things? Play with your children? Drive or use public transit? Are you late to work because it hurts to get out of bed? Do you avoid exercising or going out to see friends?
As you know if you’ve dealt with it, untreated serious pain impacts just about every part of our lives, no matter which parts of the body it effects. We become more easily fatigued and quicker to anger. We stop doing things like exercising, cooking, and cleaning, which are necessary for health and self-care.
If the spoons metaphor resonates with you, you can use it to show your doctor that you have to make tradeoffs every day when deciding what to do with your limited spoons — shower or laundry? Go to work or be an attentive parent or spouse? Take a short walk or cook a healthy meal?
Pain isn’t just an unpleasant experience. It leads to a whole cascade of forced choices and compromises that diminish our lives. Make sure your doctor knows that.
You’re probably familiar with the scale medical professionals use to assess pain. You simply rate your pain from 0 to 10, with 0 being no pain at all and 10 being “the worst possible pain.”
As plenty of doctors and nurses themselves have pointed out, this scale has potential for misunderstandings and bias to creep in. As a person with a uterus, I’ve always felt that medical professionals disregard my claims about pain because I’ve never experienced childbirth — so what would I know about Real Pain™?
Of course, everyone experiences childbirth and other painful things differently, and you can’t really compare. But that’s a comment I’ve heard both from medical professionals and laypeople for my entire adulthood so far.
If your doctor uses the pain scale, give them some context on what you mean when you use it to describe what you’re feeling.
Tell them what the worst pain you’ve ever felt is, and how you’re comparing this to that. Explain to them that you’re not necessarily looking for a “0” — tell them your threshold for being able to cope with pain on your own, without medication, or with Tylenol or ibuprofen only.
For instance, when I say “5,” I usually mean that it’s there and it’s distracting, but it’s not totally unmanageable. When I say “6,” I definitely need some sort of medication. But for me to be able to function more-or-less normally, it would have to be “4” or less.
If you’re a woman, trans person, or person of color — or if you have a disability, mental illness, or body type that’s considered “unhealthy” in our society — you might already be aware of the fact that doctors are all too human.
And humans often have prejudiced attitudes that they may not even be aware of.
People with larger bodies often find that doctors dismiss their symptoms, including pain, by telling them to “just lose weight.” Some groups of people are stereotyped as “over-dramatic” or “over-sensitive,” and their reports of pain are sometimes dismissed by doctors as “hysterical.”
Black women in particular have struggled to have their pain recognized and treated by doctors, which almost certainly has to do with our nation’s long, shameful legacy of medical abuse and violence toward Black people — especially women.
In 2017, an image of a page from a popular nursing textbook went viral online. You may have seen it. The page was apparently intended to teach nursing students about “Cultural Differences in Response to Pain” and included such gems as, “Jews may be vocal and demanding of assistance,” and “Blacks often report higher pain intensity than other cultures.”
Although the textbook was revised after public outcry, it was a stark reminder to those of us with chronic health issues that this is the sort of thing our providers are being taught about us.
And the year after that, when I had my own traumatic post-surgical experience, those sentences about Jewish people were never far from my thoughts.
Don’t hesitate to talk to your doctor about these concerns proactively. It can help you make sure that your doctor is committed to providing quality care to all of their patients.
It can also help doctors check their own privilege and biases, and it’s an important reminder to doctors who haven’t yet worked through their prejudiced attitudes that we are watching, and that their bias will be noted.
Feel free to bring up statistics about medical outcomes for people like you, and ask your doctor: “What do you plan to do to make sure I don’t become one of those statistics?” Don’t just convince them to take you seriously— make them convince you that they are.
Having a friend, partner, or family member come to your appointment and “vouch” for your symptoms can help if your doctor is skeptical — or if you have a high pain tolerance and don’t “seem” as sick as you actually are.
Given that one of the pain scales doctors commonly use literally relies on patients’ facial expressions to assess their pain level, it’s no surprise that people who don’t wear their pain on their faces have a harder time getting the care they need.
I come from a long line of people who bore their pain — physical and emotional — with patience and stoicism. That’s what you had to do in the Soviet Union, where my family is from.
I realized during my cancer treatment that doctors and nurses sometimes didn’t really understand how much I was suffering because they would’ve expected someone reporting my pain levels to be crying or screaming. I’m just not that person.
I’m the person who, as a child, accidentally slammed their finger in a heavy door, looked down at their rapidly-darkening nail, and went, “Huh, that hurts a lot, I should go stick it under some cold water.”
Your backup buddy should be someone who’s familiar with what you’re going through and willing to call you out if you minimize your symptoms — something many of us do, often unintentionally.
Until our medical system gets better about recognizing everyone’s pain, regardless of race and gender, this can be a really useful strategy.
If you’ve ever felt hopeless about getting your pain treated, I understand. I’ve felt that way too.
A big part of the reason I’m writing this is to make sure that nobody ever has to go through what I went through. And even though it can feel hopeless sometimes, it’s not.
No one should have to live with untreated pain. While things are getting better for pain patients in some ways, we have a long way to go.
Until then, discussing pain with your doctor effectively is one of the best ways to advocate for yourself and make sure that you get the care you need — not just for your pain, but for your overall health.
Miri’s self-advocacy resources:
- National Institutes of Health: How Can I Describe Pain to My Provider?
- Macmillan Cancer Support: Types of Pain and How to Talk About Them
- Hospital for Special Surgery: Speaking of Pain
- Wexner Medical Center: How and Why to Describe Pain to Your Doctor
- Health: How to Describe Pain to Doctors
- Verywell Health: Things to Know Before Describing Pain to Your Doctor
Miri Mogilevsky is a writer, teacher, and practicing therapist in Columbus, Ohio. They hold a BA in psychology from Northwestern University and a master’s in social work from Columbia University. They were diagnosed with stage 2a breast cancer in October 2017 and completed treatment in spring 2018. Miri owns about 25 different wigs from their chemo days and enjoys deploying them strategically. Besides cancer, they also write about mental health, queer identity, safer sex and consent, and gardening.