Invisible Pain

Junior year of high school, first week of soccer practice in the humid, 90-degree heat of a Kansas August day, and I’m running lines up and down steep, 70-degree hills. My quad muscles burn deep and heavy with pain like barbells strapped to my waist, and a dizzy fog makes my head swirl. As I dig my right cleat into the grass to take my next stride, my ankle snaps beneath my weight, and I tumble backwards to the bottom of the hill. 

“Lister, what the hell are you doing? Get your ass up!” My coach stands atop the hill, looking down at me with a glare and his right foot perched on top of a soccer ball, posed like a Pelé statue. The rest of my team holds their hands on their hips, gasping for air and rolling their eyes, swearing my name under their breath. 

“I rolled my ankle, coach,” I say, as I wipe clumps of dirt off my legs and shirt. 

“You’re hurt again!?! First your quads, then your hamstring, now this?” 

I push my hands off the ground, stand up on my left foot, and try to put pressure on my right foot, but it’s stuck and throbbing in a perpendicular position to my shin. “Look!” I say, pointing at my disfigurement. 

“Jesus, this kid,” my coach says to his assistant, frustrated with my chronic injuries. “Fine, go to the trainer. I’m done with you.” 

I wait for my ankle to slowly release and straiten enough so I can put pressure on it, then turn my back to the hill that defeated me and hobble back to our school locker room two hundred yards away, my head lowered to the ground in shame. The trainer puts my ankle on ice and suspects that I have a slight dislocation. 

Weeks later on a Saturday morning, I run around the track with both ankles taped for stability while my coach clocks my time for a two-mile sprint. I need to get it under 12 minutes to qualify to play in our game the upcoming week, but I never have the stamina to beat the clock. I’m the last player left on the team that needs to meet the two-mile time requirement. 

“13 minutes, 32 seconds. Take a breath, get some water, and go again,” coach says. I bend forward and rest my hands on my legs, my throat burning, heart pumping through my chest like a Saturday morning cartoon, head dizzy, and the sweat dripping off my skin like raindrops. 

What I did not know in high school is that the dizziness that I constantly encountered when running, or even when simply standing up too fast from a sitting position, was a common symptom of hypermobility. Blood vessels of a hypermobile patient can stretch excessively, allowing gravity to pull blood down the body and pool in the gut or legs.¹ With less blood flow to the upper body and specifically the brain, it causes frequent lightheadedness. Blood pooling in the gut can cause irritable bowel syndrome, which I suffered from a young age, and blood pooling in the legs can cause the intense pain I often felt in my quads and calves, and the frequent cramping that left me on sidelines chugging water and unable to compete late in practices or games. 

This condition left me believing that I was not tough enough to compete as an athlete, that perhaps I lacked the will to push myself like my teammates, or simply did not have the competitive drive to perform under pressure. I took my coaches’ sentiments and disdain for my injuries to heart and transformed it into shame and guilt, giving up on sports my senior year of high school.  

As a young man, I often let other people tell my story for me, like my coaches assuming I didn’t have passion or grit instead of legitimate severe pain and a joint disorder that caused frequent injury. In music, I believed band directors telling me I wasn’t talented enough to lead, and in social outings I let friends make decisions as I sat back on a wall and listened to them converse, dance, and engage. As I grew older, though, and started to write in college, learned to use my voice on paper, and started receiving diagnoses for issues like hypermobility, my narrative confidence grew; I felt the power of telling my story rather than having it told to or for me. Invisible Pain is another step on that narrative journey, to tell a story of chronic pain and to own it rather than hide from it in shame.  

In 2023, psychologists Georgiadis and Johnson performed research on the impact of narrative stories on chronic pain treatment. They argue “…that narration can help restore and promote relief, calm, hope, self-awareness, and self-understanding in chronic pain sufferers.”² I have often felt the healing effect of sharing my chronic pain stories with others. When I was younger, I worried more about others’ perception that I was complaining, that my pain was no worse than the average teenage athlete, so I hid from it and dealt with it internally. As an adult, I’ve learned to take care of my body and my health better, including being honest about what my restrictions are and not feeling ashamed that I can’t drink a beer without a severe inflammatory response, or that I need a pink, electrolyte drink multiple times throughout the day to keep my blood healthy and prevent myself from getting dizzy. Each person’s unique requirements to sustain our health is a factor that shapes our identities whether we recognize it or not, so being honest with ourselves about the state of our health not only keeps us physically healthier, but emotionally and psychologically healthier. 

As Georgiadis and Johnson explain in their 2023 study, “combining positive psychology techniques and narration can have synergistic benefits for pain sufferers, and… narration can have advantages for healthcare research and policy.” Not only can telling a narrative about pain help the pain sufferer, but it also supports better research and policy in healthcare. Pain sufferers need to be honest about their pain for healthcare providers and researchers to understand the full context of symptoms that help shape their research and policy. And providers need to listen, not discount, the patient in this process. Providers should support the narrative voices of their patients so that patients can confidently tell their stories and learn the full spectrum of issues that help providers diagnose and help researchers collect data.

Georgiadis and Johnson also propose that “therapeutically, personal narratives have been shown to support personal values, identity formation, positive emotions, resilience and purpose. For example, encountering a negative event such as a life-threatening diagnosis, can turn into a positive story of experiencing redemption via personal courage and realisation of deeper meaning and a new purpose in life. This can increase self-worth and resilience.” After my recent diagnosis with Axial Spondyloarthritis, an autoimmune disease that causes chronic inflammation and pain in joints along the spine, I felt relief and validation that the chronic pain I have experienced my whole life had a legitimate cause. It has offered me a new direction and purpose to research my own health, the disease and its origins and treatments, and how I can improve my daily health and live a fuller life. Part of that process has been to join support groups, learn from others that have similar diseases, and share stories, whether through this blog or in meetings with other pain sufferers. 

And as equally important as a patient sharing their story, is healthcare providers listening to a patient’s truth. Pain is subjective and is felt and defined differently by everyone, but it is dangerous to assume patients are exaggerating or not capable of describing the true nature of their pain before investigating it. One of the final and most crucial discoveries of the Georgiadis and Johnson study is that often “people struggle to articulate their personal pain story in a way that is understood, heard, or taken seriously by others, including health care professionals. In clinical consultation, patients are often forced to express pain through assessment tools that collapse the multi-faceted nature of pain into simplified generalisations or into individual, disconnected, items that fragment pain experience. Being unable to express pain through personal narrative results in decontextualised care that is detrimental to health and well-being.” To provide the most helpful and efficient healthcare, we must therefore listen to patients first, especially because pain is subjective. As I continue to tell my pain narrative through this blog, I encourage others to do the same. You are the best advocate and the best storyteller for your pain journey, so learning how to narrate your pain is key to healing both internally and externally.

1. Hakim A, O’Callaghan C, De Wandele I, Stiles L, Pocinki A, Rowe P. 2017. Cardiovascular autonomic dysfunction in Ehlers-Danlos syndrome—Hypermobile type. Am J Med Genet Part C Semin Med Genet 175C:168–174. ↩︎
2. Georgiadis E and Johnson MI (2023) Incorporating personal narratives in positive psychology interventions to manage chronic pain. Front. Pain Res. 4:1253310. doi: 10.3389/fpain.2023.1253310 ↩︎