Lessons From a Wonderfully Rare Community, and a Farewell

Lessons From a Wonderfully Rare Community, and a Farewell
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Almost four years ago, my life changed. After a decade of invasive tests, hospital visits, and limited answers, I was diagnosed with endometriosis. As I navigated the medical system here in the U.K., I soon became frustrated at the multiple administrative hurdles and shockingly unsupportive doctors.

After I vented my woes on my personal blog, a talented writer, also afflicted with endometriosis, contacted me. She told me she liked my writing. Her name was Serena Lawrence.

From then on, I became a writer for Endometriosis News. Three years and seven months later, I am typing my last column. It has been quite the ride.

I never expected what came next.

Until I began writing this column, I had no one to talk to in depth about this disease. I attended a support group, which was a positive experience. Yet, what I received soon after writing my first column was a completely different and magical beast.

Strangers would email me, describing every detail of their own journeys, and sharing their own frustrations and hopes. Below my columns, I received comments every week, written with such raw honesty that they often reduced me to tears. Through the words I’d typed, they saw me, as clear as day. But they also saw themselves. I wasn’t alone anymore.

Some days, I could reply to my readers very fast, while on other occasions it would take me weeks to do so, due to my erratic health. Yet each email, and every comment, meant the world to me. They got my twisted sense of humor, and felt my pain when I wrote about the sad times. Most importantly, they all loved my dogs.

One last time, wave at your fans, boys. (Photo by Jessie Madrigal)

I then met the rare disease community.

With every weekly column, I got to know my co-workers, each of them living with rare illnesses I had heard little or nothing about. We connected through bad jokes, shared interests, and a tendency to misbehave.

It didn’t matter what they knew about endometriosis. They understood what it meant to deal with a life-altering condition. They also taught me a few lessons, including:

Being ill does not mean being limited.

Those of us with a rare, chronic illness do things differently. But so does everyone else. We are not robots meant to replicate each other. Yes, I may live my life asking myself, “What would ’90s Madonna do?” but still, I am very much my own person. My limitations are just my own way of doing things.

I am neither a walking disease nor a burden.

The condition that trips me up is simply another side of life. Just like my obsession with Captain America’s biceps, or my penchant for lip syncing while cooking, endometriosis is just “a thing” adding up to my existence.

My community understands that I am living despite very painful symptoms. I am not slowing others down, I am a lesson in resilience.

A sense of humor is a gift.

This is what happens when you discover you are part of a huge community full of quirky characters with unapologetic points of view. The version of me that cracks silly jokes is the one my community recognizes as the most real. Also, if I am to spend most of my life undressing in front of strangers and telling them my most intimate habits, I am going to do so having the last laugh, even when lying legs akimbo, with no shame (and no underwear!) left.

Belonging to the rare disease community means being part of something much larger than my own existence. And that is a life-affirming blessing.

Sunnier days ahead for me and the sausages. (Photo by Cristina Madrigal)

I want to thank everyone who has read my column.

Thank you for allowing me to speak my truth. Thank you for appreciating my honesty.

I will be eternally grateful to the family I leave behind, the talented team of misfits who have turned Endometriosis News into a celebrated website. A safe space for anyone living with sabotaging ovaries and malfunctioning uteruses. It’s been an honor.

I will especially cherish each time my editors called me out for using British English.

Finally, to my endometriosis people: Don’t give up. You’ve got this.

xxx Jessie, Nero, and Jarvis, aka Dachshunds & Duvets

***

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, and are intended to spark discussion about issues pertaining to endometriosis.

Jessie is a writer living in the South of England. She was diagnosed with complex endometriosis in 2016 after two decades of chronic pain, PMDD, and suffering from other health issues since the age of 12. She is a lifestyle and science writer, but has also produced several screenplays and short stories. She is also a lip-synch assassin, a coffee snob, and Madonna’s biggest fan. In 2019 she ran The London Marathon, although her favorite pastime is curling up under a duvet with her two sausage dogs nearby. She writes about periods and endometriosis because she wants to help improve the lives of anyone diagnosed with this disease
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Jessie is a writer living in the South of England. She was diagnosed with complex endometriosis in 2016 after two decades of chronic pain, PMDD, and suffering from other health issues since the age of 12. She is a lifestyle and science writer, but has also produced several screenplays and short stories. She is also a lip-synch assassin, a coffee snob, and Madonna’s biggest fan. In 2019 she ran The London Marathon, although her favorite pastime is curling up under a duvet with her two sausage dogs nearby. She writes about periods and endometriosis because she wants to help improve the lives of anyone diagnosed with this disease

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