You’d think that, considering their job, doctors and healthcare workers would be willing to treat someone in pain. It feels like common sense that if you’re experiencing pain, new or ongoing, you go to a doctor, and they help. Unfortunately, this is often not the case.
More than 20% of Americans have chronic pain
In 2016, the CDC estimated that more than 20% of Americans had chronic pain. (Prevalence of Chronic Pain and High-Impact Chronic Pain Among Adults — United States, 2016 | MMWR) We have no way of knowing yet how high that number will grow with things like Long Covid becoming a reality for so many of us. What those of us who are disabled and chronically ill know, though, is that doctors are generally not on our side when it comes to treating pain.
As someone with an illness that includes debilitating pain as an actual symptom, I have some insight into how doctors think about pain and how to communicate it with them effectively. I’ve watched dozens of friends try to navigate this part of healthcare, I’ve done it myself for more than a decade, so I know there are some things you can do to make the process work for you.
Go in assuming that your doctor will downplay your pain
Go in assuming that your doctor will downplay your pain. Doctors work off of two assumptions that are going to make things difficult for you.
1. They assume you’re exaggerating
First, they assume you’re exaggerating. This is a very common experience for pain patients, and even though the rule is medicine is supposed to be that they err on the side of caution when it comes to treating pain, that’s often not the case. This is especially true if you appear to be functioning through pain; if you’re not unconscious from pain, doctors believe your pain is not as bad as you say. They don’t account for chronic pain patients being excellent and experienced at masking pain, and they don’t account simply for necessity when it comes to functioning.
2. They believe that there is a baseline level of pain that is normal
Second, healthcare workers and the medical industry as a whole has this belief that there is a baseline level of pain that is normal, that is acceptable. You don’t have to accept that as true.
Bring numbers and facts
When you go to a doctor to talk about pain, new or chronic, go prepared with a few numbers and facts about your pain. They will not ask for all of this information, but you’re going to control the narrative by giving it to them anyway. You’re going to take that 1-10 scale they use and make it work for you.
Do yourself a favor and write all this down on something you can bring with you.
Don’t assume you’ll remember everything, especially if they try to cut you off or you get emotional.
You need your doctor to know your 10. “10 being the worst pain you’ve even been in” is usually how healthcare workers describe the high end of their pain scale. The problem is, “worst pain you’ve ever been in” is entirely subjective. Create context. Tell them the worst pain you’ve ever been in, whether that was a broken leg or labor or a heart attack. That’s what you’re basing this scale off of, not their understanding of “bad” pain.
Be graphic, specific, and descriptive when talking about your pain.
That word—”pain”—means nothing specific. Describe whether it’s achy, stabbing, burning, throbbing. Be very specific about where the pain is, whether it moves and where, and if it includes any other sensations like tingling. Go into detail about when the pain changes and how (in both the specific feeling and the intensity). That includes what makes it worse and what makes it better.
Unfortunately, your healthcare team is as ruled by capitalism as everything else in your life. That means you need to be prepared to describe any changes to your life because of the pain. If you can’t work or can’t do the same job, if you can’t do your household chores, if you can’t dress yourself—tell them any of these things that apply.
There are multiple numbers you should be prepared to give them beyond how you feel right now (all on that same 1-10 scale):
- Current pain
- Your average baseline*
- The worst pain in the last 24 hours
- The worst pain in the last 7 days
- The best level in the last 24 hours
- The best level in the last 7 days
- If this pain is chronic, include your average pain during a “flare-up”
Try to describe what you were doing during those best and worst moments. Try to describe whether the type of pain changed too (went from burning to stabbing, for example).
*I mentioned an average baseline. Some people’s baseline always includes pain. Doctors will assume that your base is no pain if you don’t tell them otherwise. “I am never not in pain” is a thing you need to say if it’s true. “I was never in pain before” is just as important.
Doctors are TRAINED to practice discrimination
Doctors practice discrimination. Doctors are TRAINED to practice discrimination. There are things that will make doctors less inclined to believe you.
- If you’re BIPOC
- If you’re transgender (especially if you’re on hormone therapy)
- If you’re fat
- If you’re there about any pain related to menstruation
- If you’re neurodivergent
- If you take ADHD meds
- If you’re visibly disabled
Here’s how you start to combat that discrimination
Here’s how you start to combat that discrimination:
- Bring a witness. Someone who can speak to how pain has changed and debilitated you. It sucks, but the reality is that if you fall under one or more of the categories above, you should try to bring someone who does not. You’re not going to change the system in your appointment, and that’s not your goal; make the system work for you, even though the system is horrible.
- Do your research. Know what they should ask and what they should look for. If they don’t, push. Don’t let them be the only person in the room with any say about your pain and your symptoms.
- Know your rights. Whether at your PCP or an ER, you do not have to speak with the doctor/nurse assigned to you. Fire them from your care. Tell them you’re not being cared for to YOUR standard and ask for someone else. Make sure you know the contact info of the practice manager so that you can escalate as needed.
- Use your community. Disabled people and people living in chronic pain are not uncommon. Get on social media and ask “is this normal?” and “should I be worried?” Help is available outside of doctor’s offices and will help you once you see a doctor. Make use of it.
The most important thing to learn is this:
The only “normal” level of pain is none.
You should not be in pain.
You do not deserve to be in pain.
If you are in pain, don’t accept that nothing is wrong.
Pain is exactly how your body tells you there’s a problem. Listen to it.
Getting medical care for pain is so, so hard
Getting medical care for pain is so, so hard. It’s even harder for marginalized people. This is not going to be an easy thing, and there are risks to even getting care, but this is worth it.
Stick with it. Know that you deserve care. Fight to get it.
You. Deserve. Care.