I recently finished “Please Read This Leaflet Carefully,” a fiction novel by Karen Havelin. The book’s main character lives with endometriosis, asthma, and multiple allergies that have defined her existence, relationships, and her view of the world. The novel takes us through key events and moments of mundane daily life as we travel from where she currently is to a time before disease took hold of her body.

The novel is an extremely accurate and intimate portrayal of endometriosis symptoms, told by a patient. Havelin condenses a world of pain, strained relationships, and tiny sparks of joy within a very readable narrative. 

This novel has had a particular effect on me. Not only did I identify with the main character, but also the story made me step out of the “now” in which I currently live. Presently, my head is full of fear, doubts, and “what ifs,” as I am trapped in Madrid, under lockdown due to the coronavirus pandemic. I take each day as it comes, assessing my physical health from the moment I wake up, as well as keeping a close eye on my emotional state. Staying in the now is my current mode. 

Yet, reading such an all-encompassing account from a fictional, yet fellow endometriosis patient has made me time travel.

Suddenly, I was delving into my past.

I remember being an athletic 10-year-old, well into martial arts and high-speed running. As a young girl, I spent my never-ending summers keeping up with my older cousins, cycling furiously on bikes that were too high for me. I rollerbladed with my friends, fearlessly crashing into lampposts — it still hurts. 

I wanted to be an actress, a singer, some sort of performer. My dreams were limitless. I never wondered, “What if I can’t do it?” Never mind that I lived in a small, unexciting town in southern Spain, or that my father opposed all of my artistic aspirations. What never occurred to me was that in time, my body would become the biggest hurdle, sabotaging even the smallest of ambitions. 

I knew nothing of the doctors’ appointments ahead of me, the complicated surgeries, the repeated blows to my attempts at having a “normal” life. The lost jobs, missed opportunities, and broken relationships, all courtesy of a chronic illness I never imagined existed. Cut to the unforeseen future, where I am finally diagnosed and able to put a name to my saboteur. 

That’s when the most unexpected twist happens.  

There is life after disease, an alternative reality I never saw coming. One that has taken me on an entirely different journey that has defied all of my expectations. There is the disease plaguing my body, and then there is a surprising version of myself. I have become a woman I never saw coming.

I am not a singer or a successful actress, but I am a writer, a columnist, and a marathon runner; someone who now writes screenplays for fun, and who can also belt out Lady Gaga’s “Always Remember Us This Way” and hit every note. Whether it is pleasing to the ear is another matter. 

As patients, we take the roads no one would consciously choose. We write up our rules and build a path that is not what we had envisioned, but one that can be as exciting and adventurous as our minds allow. 

For those of us who are chronically ill, and for those who are carers, there is a before and an after. Before diagnosis, after treatment, pre-illness, post-surgery. There was a world before this coronavirus pandemic, and there will be a world after. 

And running constantly through it all is a relentless, rebel heart. One that is beating inside every single one of us, daily. 

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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.