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The lessons I learnt growing up with an undiagnosed medical condition and chronic pain

Words by Cara Briggs

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

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

I’ve grown up with a benign tumour in my leg that has caused me pain and restriction my entire life. To medical professionals, my condition was always a big question mark. Despite all the tests and specialist appointments, no one could give a definitive answer to 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. Fibro Adipose Vascular Anomaly (FAVA) is a rare mass that wasn’t recognised in the medical community until 2016. The treatment? A form of immunosuppressants that prevents it from growing.

As you can imagine, starting immunosuppressants during a pandemic wasn’t something I was exactly thrilled about. But the level of relief that came with finally having both a diagnosis and treatment plan was unparalleled.

For me, this past year has brought with it physical freedom I had never known before. To be able to move pain-free is a gift I’ll never take for granted. I’ve also found myself in constant reflection, asking, ‘What did this phase of life teach me?’. My need to find a lesson in life’s struggles may illicit an eye roll but bear with me – hindsight has taught me a lot.

My ‘problem leg’ stepped into the spotlight during a grade one running race. The heavy stares of spectators filled me with embarrassment. I yearned to be invisible. Parent’s encouraging cheers echoed, challenging my feelings of defeat.

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

This spotlight on my ability, or lack thereof, highlighted something was wrong. I was promptly thrust into a world of medical appointments and scans, which revealed a thick fibrous tumour that wove itself around my hip socket.

As I grew, so did the mass in my leg. Destructive and restrictive, my leg would object to certain movements with a sharp stab, stealing my breath. Everyday actions like sitting cross-legged were out of the question. At school assemblies I would be the envy of my friends as I sat on a chair, promoted to ‘teacher status’. But the novelty of this grew old – while I enjoyed the attention, I was ashamed of my difference.

In retrospect, I’m grateful for the early onset of struggle. Childhood resilience acted as my armour. I accepted my reality and continued with life. I didn’t fall victim to the rumination that can come with age. The watchful waiting of my condition continued throughout adolescence, amplifying teenage angst. I watched and waited. For what? I didn’t know.

At 14, I began to experience changes that extended well beyond those of puberty. For months I was in agonising pain, exponentially worse than what I was used to. I took shelter in the belief that my pain tolerance was infinite. Juvenile vanity took precedence ­­– as long as I wasn’t seen gripping the walls for support, I’d be fine. If I hobbled to class when the halls were empty, I’d be normal.

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

At the end of 2011, my yearly scan showed my hip was permanently dislocated. It was a consequence of the tumour. With such a dramatic finding, I felt comforted. My agony was justified. This time, the doctors could confidently tell me which treatment was needed: a total hip reconstruction. This is something you generally don’t expect at 15 but the promise of pain relief sparkled reassuringly.

My next six months were spent learning to walk again. A humbling experience for anyone, let alone a painfully self-conscious, pubescent teen. The running theme of my life at this stage was an array of encouraging Hallmark cards­ with messages like ‘Just keep going,’ and ‘It will get better’. Ironically, it actually did.

As I progressed further in my recovery, I was determined to make up for the lost time. I was socialising eagerly and immature decisions peppered my path in high school but I don’t regret one. Although I had faced adversity beyond my years, I revelled in adolescent clichés.

I enjoyed my teenage angst because it was something I shared with my friends. For once, my condition didn’t take precedence. By not falling victim to circumstance I had managed to build a foundation of strength.

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

Asking myself what I’ve learnt through my journey has highlighted how wise we can be as children. When my condition first introduced itself, acceptance came naturally. I didn’t dwell on my differences.

While pain and limitations are present, they’re manageable. It’s the wishing for different circumstances that’s so debilitating. The times I resisted my reality was when I suffered the most.

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

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

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