From Diagnosis to Advocacy: My Path to Becoming a CML Patient Leader

People often ask me how I became an advocate for myself and other CML (chronic myeloid leukemia) patients. I often ask myself the same question. Before my CML diagnosis, it was not unusual for me to question my doctors, or to research medical jargon and diseases, but I never shared my opinions or views publicly.

When I was first diagnosed with CML, I was hospitalized, and extremely ill. My diagnosis came as a shock to me, and to everyone who knew me. The common response was, “But you have always been the healthy one!” And I was, and gratefully still am “healthy”. 

As expected the phone calls came in droves. I was too sick to speak to everyone and conserved my energy to assure my kids and immediate family, that I was OK, leaving the other calls to my husband.

Hearing him repeat the same information over, and over, and over was exhausting to both him and me. That, coupled with the fact that I knew very little about CML, left everyone waiting for more information.

Once I was released from the hospital and began my CML journey, I started to dig in and learn everything I could about CML. And of course, my friends and family wanted continued updates, too. The biggest question was whether I was going to live or die.

Wanting to ease everyone’s mind, and keep them abreast of my progress, my diagnosis, and my treatment, I found that posting what I learned, how I was doing, and what to expect, on a blog was an easy way for everyone to remain connected and updated on me and my condition.

What I quickly experienced, much to my surprise, was that I was receiving messages from other CML patients all over the world! Literally, all over the world! 

People living with CML were reaching out to thank, connect, and support me. In 2011, those affected by CML faced a scarcity of information and support options, starkly contrasting today's resources. It seemed as though I was blazing a trail! 

This not only shocked me but also inspired me to continue to share my journey. Somehow I went from “just a girl with CML” to an actual CML advocate. I was approached by pharmaceutical companies, cancer groups, CML Busters, Healthy Voices, Clara Health, WEGO Health, and the Patient Story, among others, to share my journey.  

People began to say that the “reason” I got CML was because I have helped so many, which I took to heart, and figured that if there is any truth in that logic, then I had better keep on sharing; for a long, long time! 

Sharing my journey and helping others inspires me, and brings meaning and purpose to my life. It was never my intention, yet one of the greatest blessings that I have received since hearing those dreadful words, “You have leukemia.” 

And that folks, that is how I went from being a CML patient to a thriving CML patient advocate!

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Email: CMLMichele59@gmail.com