The Tricky Journey of Creating Something from Illness

The Tricky Journey of Creating Something from Illness

It’s been about three years since I stopped being a lifestyle writer and embarked on a career of writing about women’s health. It was more a consequence of living with a disease that wouldn’t quit than a straightforward choice. Long before I began my endometriosis work, my career veered toward writing because my body had sabotaged my attempts to work from anywhere but home.

When the possibility of writing about my disease arose, I thought why not? I might as well do something with this imperfect uterus and these ovaries that are set on self-destruct. But it is a tricky place, tying my work to my disease. It can be therapeutic, but it is never easy.

Being in control is undeniably empowering.

“Please Read This Leaflet Carefully” is a novel by Karen Havelin. Havelin and her main character both have endometriosis and asthma. The book is an intimate view of life with a chronic disease. I asked Havelin how it feels to share the diseases with her protagonist.

columnist pic
Karen Havelin’s novel examines chronic illness. (Photo by Jessie Madrigal)

“I had some issues starting up,” she said. “Then it was a relief to give the anger and the sadness and the pain the space they took. … For someone whose life and body are constantly being examined by strangers, it can be extremely empowering to take control of how a story is told.”

Complaining about this seems ungrateful.

Writing about my disease turns my voice into a force for good. Other patients become advocates, working for charities such as Endometriosis UK and lending their experiences and their faces to bring attention to this disease.

But thinking about my disease almost every day, even when symptoms are dormant, affects my emotional health. Reliving things I wish I could forget is exhausting and sometimes upsetting.

I am fortunate to do what I do. But I wish I did not have to live with this disease.

Catherine and Lauren Lee are twin sisters who sell a plant-based supplement aimed at providing relief for painful periods. Both women have endometriosis.

“Making Semaine a business meant I would have to think about my endometriosis a lot more,” Catherine told me. “I completely understand the conflict and feeling grateful to have a driving purpose, but also wishing you didn’t have endometriosis to begin with.”

They’ve powered through the pain to help others.

Havelin and the Lee sisters have done something incredible. They have worked through pain with bodies that have sabotaged and limited their daily lives.

Life is unpredictable. I never thought I would live with an incurable disease that would affect me daily. After years of chronic pain and constant suffering, I found my voice. But also a reason to be heard: to help others like myself. My writing is a double-sided gift that I am willing to live with and use with purpose.


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.