What growing up with undiagnosed chronic pain taught me

“The times I resisted my reality were the times when I suffered the most.”

Receiving a diagnosis can bring great comfort. For the first 24 years of my life, I was denied the relief of having an answer, a reason for my suffering.

I grew up with a benign tumor in my leg which has caused me pain and restriction all my life. For medical professionals, my condition has always been a big question mark. Despite all the tests and appointments with the specialist, no one could give a definitive answer on what it was and how to treat it.

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It wasn’t until last year that I finally received an accurate diagnosis. The fibro-adipose vascular anomaly (AFAV) is a rare mass that was only recognized by the medical community in 2016. The treatment? A form of immunosuppressants that prevents it from developing.

As you can imagine, starting immunosuppressants during a pandemic was not something that really thrilled me. But the level of relief that comes with finally having a diagnosis and a treatment plan was unparalleled.

For me, this last year has brought me a physical freedom that I had never experienced before. Being able to move without pain is a gift I will never take for granted. I also found myself in constant reflection, asking myself, “What has this phase of life taught me? “. My need to find a lesson in life’s struggles may make me roll my eyes, but be patient – ​​hindsight has taught me a lot.

My “problematic leg” was put in the spotlight during a freshman run. The heavy stares of the spectators bothered me. I longed to be invisible. My parents’ encouraging cheers echoed, challenging my feelings of defeat.

Red with exhaustion, I was frustrated. All my efforts to run faster were ignored by my body. From that moment, I quickly realized that my athletic abilities were on the wrong side of the unusual. The “I ran in a race” ribbon would be my only trophy.

This spotlight on my ability, or lack thereof, highlighted that something was wrong. I was quickly thrust into a world of medical appointments and CT scans, which revealed a thick fibrous tumor that had woven itself around my hip.

As I grew, my leg mass also increased. Destructive and constraining, my leg opposed certain movements with a jerk, taking my breath away. Everyday actions like sitting cross-legged were out of the question. At school assemblies, I was the envy of my friends because I sat in a chair, promoted to “teacher status.” But the novelty of it got old – while I enjoyed the attention, I was ashamed of my difference.

Looking back, I’m grateful for the early start of the fight. Childhood resilience acted as my armor. I accepted my reality and moved on with my life. I haven’t been a victim of the rumination that can come with age. The watchful expectation of my condition continued throughout adolescence, amplifying adolescent angst. I watched and waited. Why? I did not know.

At 14, I began to experience changes that went far beyond those of puberty. For months I felt excruciating pain, exponentially worse than I was used to. I took refuge in the belief that my pain tolerance was infinite. Youthful vanity took precedence – as long as I wasn’t seen clinging to the walls for support, I was fine. If I hobbled in class when the hallways were empty, I would be normal.

If my hair was perfect and my teeth were white, I could distract from my struggle and pretend to be fine. Although trivial, these control elements were my lifeline. Until I felt like I had no life.

At the end of 2011, my annual scan showed that my hip was definitely dislocated. It was a consequence of the tumor. With such a dramatic discovery, I felt comforted. My agony was justified. This time, the doctors were able to tell me with confidence what treatment was needed: a total hip reconstruction. It’s something you wouldn’t usually expect at 15, but the promise of pain relief shone through reassuringly.

My next six months were spent learning to walk again. A humbling experience for anyone, let alone a painfully embarrassed pubescent teenager. The running theme in my life at this point was a series of encouraging Hallmark cards with messages like “Just keep going” and “It’ll get better.” Ironically, this is indeed the case.

As I progressed in my recovery, I was determined to make up for lost time. I socialized eagerly and immature decisions plagued my high school career, but I don’t regret any of them. Even though I had faced adversity beyond my years, I reveled in teenage clichés.

I enjoyed my teenage angst because it was something I shared with my friends. For once, my condition did not take over. By not being a victim of circumstance, I had managed to build a base of strength.

In the 10 years since my surgery, I have had to walk the fine line of rehabilitation daily; do enough to build strength, but not too much to induce pain. My diagnosis finally relieved me of the cycle of suffering.

Asking myself what I’ve learned along the way has highlighted just how wise we can be as children. When my condition first presented, acceptance came naturally. I didn’t dwell on my differences.

Although pain and limitations are present, they are manageable. It is the desire for different circumstances that is so debilitating. The times when I resisted my reality were when I suffered the most.

What did all this teach me? I’ve learned that measuring life by its difficulties will only keep you trapped. It’s when you understand how to accept your struggles that you can begin to live freely.

For more advice on living with a chronic illness, go here.

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