Pain is subjective.
Pain is measured on a scale of 1 – 10 when you go to the doctor.
Pain isn’t always taken seriously.
Pain is frustrating.
Pain can be described in many different ways: throbbing, deep, burning, aching, chronic, acute, debilitating, sharp, dull.
Everybody experiences pain. If you don’t you could seriously hurt yourself. For something that we all encounter, why do we have such a hard time understanding pain?
I have difficulty describing pain in a way that other people understand and believe. When my hands are cold, I can touch my friend and they can feel the temperature. I can’t hand them my pain to feel for a few seconds before they hand it back.
Sometimes I wonder what would happen if it were possible to hand your pain over to someone else for a minute, for them to experience. Would I want to inflict this pain on a friend or family member, even for just a few seconds? Maybe it’s selfish, but I would. After all, if I can carry this pain with me every day, they can withstand a few moments with it.
I do feel guilty wishing for this, only because I know that I have had practice with pain. If I were to hand it over to someone inexperienced, they wouldn’t know how to handle it. I don’t think that I have a high pain tolerance – I know when things hurt very badly – I just have learned to wait for it to pass and not let it show.
I’m sure many people with chronic illness can relate to this – feeling something and not letting it show on the outside. We often look very well. When others would grimace or cry out in pain, we are stoic, even smiling.
I want to share a story where this ability to look calm when in pain caused more damage to my body. This is a story about how I looked fine and acted fine, when things were very very bad. So many doctors have minimized and trivialized my pain and I followed their lead. This is a story about how I initially minimized a severe injury. This is also a story about how that hardship has taught me to be mindful of physical pain, express that pain and advocate for myself.
Some background information, before we dive in. I have had many injuries. I’ve broken both ankles, both elbows, and one wrist. I’ve sprained both ankles multiples times, sprained my knee, and sprained the other wrist. I broke both arms at the same time (pictured) and waited for about 16 hours before deciding to go to the doctor. I sought treatment for chronic neck and back pain for years. I sought treatment for debilitating menstrual pain for years (and I’m still seeking it). My ankle sprains took months to heal on two separate occasions. Doctors treated me as if I were exaggerating or even lying, so I thought that maybe I just couldn’t handle pain as well as other people and that maybe nothing was really wrong. Spoiler alert: I was wrong.
In the summer of 2017 I took a trip with four friends to Iceland, England, and Scotland. We crammed a lot of beautiful sites into a few days. At that time, I was experiencing symptoms of chronic fatigue and chronic pain, but I didn’t have a diagnosis or a doctor that believed me. I pushed myself pretty hard to go on hikes, go out for drinks, and cram as much as I could into each day.
We packed A LOT of fun into our trip. On day 13 of the trip, we reached the Isle of Skye in Scotland. The weather was perfect, with the sun shining, the sky was clear and blue, the ground was lush and green. We’d heard of midges swarming in the summer, but didn’t have any in our way. We dropped our bags off at the hostel and immediately got back in the car to find more excuses to be outside.
Enter the Old Man of Storr.
It was the 13th day of our trip and I continued pressing on, despite my fatigue. It was easy to ignore my distress when I could look all around me and see such beauty. We parked the car and started the trek up to see the Old Man.
The legend says that a giant was buried there and the massive rock formation is his thumb protruding from his grave. There is a grouping of massive stone formations (called the Storr) jutting from the hillside, surrounding the Old Man, who looms above them all. You can see the stones looming from the base of the hillside and they just keep getting larger and larger as you walk the 45 minutes to the base of the formations. It seems unfathomable that people have actually climbed the face of the Old Man and stood at the top.
With all of the wonder and mythology surrounding the stones, the view of the view of Loch Leathan and the sea were even more magical. We continued our hike in order to see the Storr against the backdrop of the sea. We were not disappointed.
We rested at the top and then began our descent. I was excited to get back to the car and see what other dreamy sights lay in store for us. We were all walking downhill at a brisk pace. I took a step forward and as I shifted my weight onto the front foot, I slipped on the gravel pathway. My front foot continued sliding forward, while my back ankle rolled in and I landed with it beneath my bum. I didn’t think much of it when it happened, except that I needed someone to lift me up in order to untangle my leg from beneath me. An older couple looked shaken and asked if I was okay, but I smiled back, reassured them, and then my husband ran over to lift me to my feet and I kept walking.
My friends asked if I was ok and I said I was fine. That’s what I’m used to saying. I kept walking and it kept hurting. I was worried, being in another country without cell phone service and not understanding how the medical system worked, but I knew I just had to get back to the car.
My friends were waiting at the car for my husband and I to make the slow descent. I walked for about 45 minutes with my ankle hurting. When we got to the car I said, “I think I broke it,” in almost a joking manner. My friends thought I was kidding because of my light tone, but I wasn’t. Listening to their advice, I put my ankle up on the dash and waited to see if there would be any improvement. My husband stopped and got frozen peas to ice my ankle and I still managed to smile in the car with my foot wrapped in vegetables.
We dropped my friends off so that they could pick up their car and continue on their way. My husband found a doctor’s office, but we were in a small town with no x-ray. The doctor thought it was a sprain, wrapped it in a compression sock and sent me on my way after laughing when I asked if I needed to pay. (This was the highlight of my medical experience – receiving attentive care at no cost).
So, looking back, the first part of this story sounds pretty crazy. Hiking for 45 minutes on a sprained ankle. Just wait.
We had 2 more full days left in the trip and I smiled through the pain the entire time. The next day, I walked to the fairy pools, which was about a mile each way, using hiking poles. A young boy saw me struggling and yelled, “you’re superwoman!” Yeah, I kinda am!
The next day, we were back in London for one more day before we flew home – it was also my 29th birthday. I got crutches and walked around the Tower of London. As I was gazing at some pretty spectacular diamonds, someone pushed past me and stepped on my swollen foot. I didn’t cry out, despite excruciating pain. Despite my fake smiles, the puffy, wincing eyes show my pain.
I made it back to the states and saw another doctor after I landed for an x-ray. Then after two more weeks with no improvement, I saw another doctor. Both said sprain. When I saw these doctors, they asked me to rate my pain on a scale of 1-10 and I said 6-8 depending on the day. I was in a boot for three months and my foot wasn’t healing.
Finally, I saw a third doctor who did an MRI and CT scan. We found that the ligament had pulled on the bone so hard, that a fragment of bone had detached and was floating in my ankle. I had surgery in November to remove the bone fragment, repair three ligaments, and install a plate and pins to stabilize the joint.
Part of me is proud that I withstood that pain for months and months and nobody knew exactly how bad the injury actually was. Part of me thinks that I’m an idiot for staying calm instead of crying and screaming every chance I got – maybe that would have made people understand what I was going through and the amount of pain I felt. Part of me thinks it doesn’t matter how I behaved or how I looked, because pain (particularly women’s pain) is never taken seriously anyway.
We can express our pain emotionally by crying, moaning, or yelling out, but we’re seen as hysterical. We can remain calm and stoic, but then the pain can’t really be that bad. How do we communicate pain in a meaningful way?
Sometimes I use this injury as a basis for comparison. Everyone knows a broken bone is supposed to hurt. Somehow, I found that pain more manageable than my menstrual pain. When I was walking around in London,with a broken and sprained ankle, I thought to myself, “this injury can’t be that bad, it doesn’t hurt as bad a my period cramps.” I found that pain more manageable than my fibromyalgia pain. I continued walking around on a broken ankle, but some days I can’t turn my head because of neck pain. Some days I can’t drive because of back pain. Some days I can’t take my dog for a walk because of leg pain. Some days I can’t look at my phone because of light sensitivity and eye pain. Some days I can’t hold my phone or text because of joint pain in my wrists and fingers.
The worst part is – I had no idea how bad my chronic pain really was until I sustained that injury and I had to see four doctors before I received appropriate care. I received a diagnosis of fibromyalgia about a year after the surgery because I kept complaining of muscle pain in my legs. I first attributed it to deconditioning and getting back in shape, but it has never gone away, and it’s now been more than two years since my ankle injury.
The best part is- this injury gave me experience navigating multiple doctors until I finally received a correct diagnosis and the care that I needed. I know that my pain is valid and I know that I deserve a provider that will help me find treatment and manage my pain.
We need a better language to describe pain and we need doctors to believe us when we describe our pain. There’s a lot about my experience that I want to unpack and I can’t untangle the threads. Why did it take so long for me to get what should have been an easy diagnosis of a broken bone? Why didn’t I believe my own pain was bad enough, just because I had other pain that was worse? What else is wrong with me since these other types of pain are worse than a broken bone? When you’re in pain all the time, what warrants a doctors visit?
I don’t have the answers. Maybe there isn’t one right answer, but many possibilities. For now, I just want a better way to communicate my pain to my doctors, friends and family so that I can finally find some relief from the pain.