Living With Chronic Pain in a Culture That Tells Us to 'Tough It Out'

Our society’s language with pain is a complex one. When a basketball player gets knocked to the ground and appears injured, there’s commentary from time to time about if they are just “playing it up” to get the foul call. If there are no bones sticking out, how bad can it be? I was raised in this similar manner. My dad is a sports guy and although I was legitimately terrible at every sport I played, I excelled in the arts. Most of my major injuries came from dance. I sustained a pretty bad sprain when I was 7 during the dress rehearsal of a play and the directions given to me by former basketball coach dad were: ice, ibuprofen, wrap it up, and get back out there. So I did. While my dad’s advice worked for me at the time, I’ve developed painful conditions that aren’t visible with the help of an x-ray or MRI machine. Just because I look all right, doesn’t mean I am. Looks can be incredibly deceiving.

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Before I started attending graduate school to write screenplays, I figured I should begin acquiring some solid knowledge-base of films I hadn’t yet seen. I went director by director and breezed through each collection of films. It was when I went through watching movies by Darren Aronofsky where something suddenly struck me. One of his earlier films is “Pi,” and while I won’t give away key plot points, the main character is a genius mathematician who also has unimaginable pain in his head. The pain captivated on film is so intense it creates a visceral feeling, even more-so for me because I experience headaches just like the main character. Think of a monster lurking within your head and you’ll never know when it will strike.

Calling what I and many others experience a “headache” is an understatement. My first migraine occurred when I was in elementary school. It resulted in me passing out and being sent home for the day. Draped under blankets, I hid from the light that made my eyes throb. In high school, I had an episode that left me unable to enunciate speech or remember who the president was. I’ve learned to deal with migraines. Sometimes my medications work, sometimes they don’t. I always know an end is in sight though, and to not get too worried when my brain doesn’t fully cooperate. Most times I just hang out in a dark room and listen to “Abbey Road.” I’ve saved my parents a significant amount of money in electricity bills this way. The other type of headache I get is called a cluster headache.

“The Beast,” “suicide headaches,” and the “worst pain someone can experience” are other names used in reference to cluster headaches.  These are words that the cluster headache community has used to describe what they go through, to put their perspective into a more commonly understood language. Think of a monster lurking within your head and you’ll never know when it will strike. Where other conditions may have triggers, these are impossible to predict. Half of my face will turn bright red and puffy, my nose will stuff, and my eye will water. It will feel like every bone around my eye is being shattered. The first time I experienced this, my parents found me on the floor screaming. Although I’m affected, an interesting aspect of this condition is that it’s known to affect more men than women.

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“Brush it off” and “tough it out” — two phrases that are perpetuated within masculine culture when it comes to pain. But cluster headaches have left people pacing, clawing at their face, and screaming. It’s a terrifying and debilitating condition. They are known to strike in the middle of the night, lasting from minutes up to three hours, and can produce pain described as 10 out of 10. When they will strike is completely unpredictable for many. One frustrating aspect of this condition is often having to prove over and over again that something is actually wrong. 

Another terrible aspect is that there is no “go-to” for medication. For some, oxygen works. There are protocols for various vitamin therapies while others try a laundry list of pills prescribed by their doctors and hope for the best. One area of research relies on the study of currently illegal substances such as psilocybin and LSD, but it’s a challenge for research to press forward when the potential treatment is taboo. Some suddenly find themselves looking to their partner more for support and at times needing to be cared for, which can be a startling change in life.

When your life is affected by a chronic pain condition, such as cluster headaches, life changes profoundly. It’s important that stories be passed along to start the conversation on pain and to build empathy. Each connection to a story can change the way our culture views pain. Each story is a step in the right direction.

We need to reach a place where frank discussions on the acknowledgment of severe and chronic pain doesn’t lead to feelings of weakness.

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While only a small fraction of the population will experience these types of headaches, many people will experience extreme pain. Cluster headaches can be switched out for a variety of other extreme pain conditions, and the conversation would still be the same. No one should feel weak because of this. It’s often said that pain is a warning sign that something is wrong. We are not “warriors” if we can deal with pain better than someone else. There are no awards. Pain is pain — it’s awful no matter who is experiencing it. 

We are warriors when we can have open discussions on how chronic pain affects our lives, and push towards better treatment and pain management options for those experiencing chronic pain conditions such as cluster headaches. Open discussions can lead to real change, and I hope that time for such frank discussions are on the near horizon.