Have you ever had a headache? Or stubbed your toe? Or accidentally burned yourself because you were too enthusiastic when flipping pancakes? (Just me…?) If so, you can probably remember what that pain feels like. Maybe not specifically, but at least enough to empathize with someone who’s done the same.
But what about more serious pains? Migraines? Broken bones? Herniated disks?
If you’ve never broken a bone, you can’t really empathize with someone who is waiting to get an x-ray. You can sympathize, sure. But, by definition, you can’t empathize.
When you go to the doctor for pain, whether a routine appointment or an emergency room visit, the first thing they ask you to do is rate your pain on a scale of 1-10, 1 being a small annoyance, 10 being the worst pain you’ve ever felt. And for most spoonies, this is exactly the point where everything goes wrong.
Right now, I want you to imagine the worst pain you’ve ever felt. Think about that moment, what was happening before, and how you responded to the pain. Now go talk to whomever is closest to you and ask them what was the worst pain they’ve ever felt. (Don’t do this if you’re on public transport or something. Obviously, don’t be creepy about it. Ask someone you actually know.) The odds are pretty high that your worst pain experience is vastly different than theirs. If I asked my mom, she’d probably describe the labor she went through with me and my twin sister, super preemie with an emergency c-section, or the pain of my brother’s labor which progressed too quickly for an epidural. If I asked my dad, he’d probably describe the time as a child he jumped off a barn roof onto what he thought was a pile of snow, but what was actually a giant block of ice, and shattered bones in his legs, feet, and ankles.
Hopefully you’ve made better life choices than my dad, so your worst pain could be very different. Or you could be one of the wonderful saints on earth called “Mom” and you could know exactly what my poor mother went through.
Everyone’s ‘worst level’ of pain is different. If you’ve never broken a bone before, then you smash your finger by accident and break it, suddenly that’s the worst pain you’ve ever felt. So that pain could be a 9. But if you’re my dad, a broken finger is around a 6, because it’s not the worst pain he’s ever felt.
This is frustrating for doctors and patients. When I first started dealing with back pain and muscle spasms, the pain was so bad I could barely move. When I went to the health center on campus they asked me to rate the pain on a scale from 1-10. I told them it was a 7-8. And the doctor did not believe me. She asked me if I was sure I was in that much pain, that it was highly unlikely I was experiencing that much pain, and that regardless she wasn’t going to prescribe me any pain killers so I should keep that in mind. She insinuated that I was exaggerating because I wanted a prescription, and then when I tried to defend myself, she told me there was nothing she could do, and that I should just take some ibuprofen.
Unfortunately, this is not uncommon, particularly for spoonies. The pain scale is relative, and that makes it hard for people to understand. Personally, this also causes a lot of anxiety. I hesitate to use higher numbers on the scale for fear that my doctors won’t believe me, and that one day I might have a different feeling of what a 9 is and won’t be able to express it because I’ve already used a 9.
The best way I’ve found to get around the Pain Scale is to describe my pain with visuals and compare it aloud to different pains I’ve felt previously. I keep a list of pain descriptors in my medical binder, as well as my personal Pain Scale to show to doctors when the need arises. That way I can show them that for me, a broken finger would probably fall around a 5 or 6, but intense back spasms and pain from endometriosis could fall around an 8 or 9.
As difficult as it is for patients, the pain scale doesn’t do much to help doctors either. Pain is one of the hardest things to diagnose and treat, and as difficult as it is to remember, doctors are humans too. They aren’t omniscient beings. Living with chronic pain is hard and can feel isolating. It’s important to keep an open dialogue with your care team and if you ever feel that you aren’t being heard, speak up for yourself, or bring an advocate so that your needs are met. What’s most important is that you are getting the best care possible.