Patient Leader

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I was diagnosed with Type 1 diabetes in 1973, and I've lived successfully with the condition for more than 50 years through many career and life challenges, including two successful high-risk pregnancies and a very active international legal and business career.  

The  fear and discrimination  of others towards my medical condition really made me feel isolated and alienated, especially early on, when I didn't know anyone else living with T1D. My response was to manage  the  information relating to it on a 'need to know' basis.  I didn't share much with anyone, even people close to me who knew I  live with T1D. I didn't want to burden anyone with responsibility for my well-being,  and I didn't want anyone interfering, even with the best of intentions. It was "my" disease, and my responsibility to manage it -- alone.  

After starting insulin pump therapy in 2008, I found myself connected to  a community of informed, engaged T1D patients I could relate to. Gradually, I began to share information,  experiences and stories with people who understood, people I didn't need to explain everything to, because they lived the same reality.  But it was a slow and very selective thaw. 

Most people still can't be trusted to 'get it'. Public misinformation about T1D is still one of the greatest health hazards faced by those of us living with the condition.

Once I began to speak, write and sing publicly about my experiences , I found that not only did I feel more freedom, but others in the community, with and without T1D, responded very positively. Now, I hope to empower others to survive and thrive on the never-ending T1D journey, as well as raise public and professional awareness of the unique challenges encountered by those living with Type 1. T1D  is typically misunderstood and often confused or conflated with other types of diabetes -- to our detriment. 

The catalyst for my change of heart occurred during an Insight Session of the T1 Diabetes Think Tank Network, a not-for-profit collaboration of T1D healthcare providers and patient opinion leaders (www.t1thinktank.com). Think Tank uses innovative methods, such as dramatic and creative arts,  comedy and storytelling to transform lives by improving communication and understanding. Think Tank has shown that by putting patients on an equal footing with healthcare professionals in a safe, nonjudgmental environment, barriers to meaningful communication fall away, the standard of care is elevated and patient self-management is empowered.

I have written and performed a  cabaret on my journey with T1D: Not Dead Yet: A Cabaret with Deep Dark Secrets. Audiences of People With Diabetes (PWD) and some in the health care professionals are supportive.