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How I Lost My Identity with Chronic Illness and Found the Real Me


I had the honor and privilege to be a part of the Bobby Jones CSF Foundation's annual conference for unite@thehill this week in Washington DC. I joined several passionate speakers who shared their expertise on wellness and facing chronic illness, especially hypermobile Ehlers Danlos Syndrome (hEDS). Ironically, every patient there was diagnosed with what is claimed to be a rare disease!


The event concluded with a session by fellow patient Kristin Means who shared her ‘Recipe for Happiness.‘ Her talk was so inspiring that I came away with courage to “come out” of a identity crisis vulnerability. I am bald due to alopecia, and it is difficult to be a woman and lose your hair- along with your sense of femininity. But more importantly, when I faced my multiple diagnosis and health scares, I lost a lot. I lost my ability to work, lost several important relationships, and ended up feeling like I lost my identity. But Kristin graciously reminded me that I am not my job, nor any role I play...but I am the sum of my happiness and connections to others in precious joyous moments. Her formula is shared here so you too can find yours.

Recipe for Happiness
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Her talk has given me the courage to face my fears and share publicly who I really am. The person I have learned to become as a result of my chronic illness. I realized I have not “lost” anything, but “gained” so much. I’ve gained clarity, perspective, newfound wellbeing, new even closer relationships of support and compassion, and an outlook that is in Kristin’s words on her celebratory new tattoo – UNBREAKABLE!


June is the month we honor PRIDE month for people who embrace who they really are. I too have a new identity in becoming a patient, an advocate, and a fellow in the community of those with rare and chronic illness. I am grateful for the gift. Many thanks to the Bobby Jones CSF Foundation for inviting me to participate (the event replay will soon be available). I met some truly inspiring and passionate people who are fighting hard for their own lives with a deep purpose that is more gratifying than any job.


While writing about my health issues has not cured them, it has helped me develop better coping skills and even contributed to better management of my symptoms (and I could argue, at times helps decrease my symptoms). There is evidence that telling the story of what you have been through can be good for your health. Researchers have found that writing about our experiences – especially traumatic, emotional, or stressful experiences – can benefit both physical and mental wellbeing.


So please welcome the new and improved me.... Shown proud and bald advocating on The Hill for rare disease with Tyler Guettler and his family from Florida. A proud moment I will treasure.

Sharing your personal story with others is healing when you find your tribe. If you ever get the opportunity to bring it to our country’s leaders by advocating - do it! May we all design a recipe for happiness!


You can find over 600 videos with experts at the foundation website https://bobbyjonescsf.org/video-library/


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