Why I volunteer

Posted December 4, 2020

Michelle has long brown hair, wears a black shirt, and smiles into the camera whilst holding a book.

Like far too many in our community, I had been on a very long and very lonely journey to my diagnosis. I was 24 when I graduated from Medical School and felt like I was on the cusp of life. By the age of 26, I was almost bedbound. With each new ailment that was added to my ever-growing list of medical problems, I felt like my life as I knew it was falling apart and nobody could tell me why. After years of countless investigations and misdiagnoses, the puzzle was finally solved after traveling abroad for answers and I was diagnosed with Ehlers-Danlos syndrome.

I volunteered for the first time with the Society at the Global Learning Conference in Nashville, 2019, having attended my first conference in 2018 in Baltimore. I’ll never forget that first conference. I met and was greeted with open arms by so many of the diligent society members and staff. Having been on such a long journey to obtain my diagnosis, to sit in a massive conference hall beside people who finally understood you, was simply overwhelming. For the first time, I felt safe to speak about my experiences and challenges with regard to my condition. I spoke to so many people and listened to so many stories just like my own. I learned there were many common themes among the issues we face as a community. What struck me most, however, was the often silent understanding among members of the community where a look, a pause, or a single tear was intuitively understood with compassion and validation.

The experience was profound and will stay with me for life. Sitting in the airport before boarding the plane home, I burst into tears. I realized that without the sheer dedication and passion of the Society and its volunteers, I would never have had this experience. Needless to say, I gained so much from the experience personally, that it was important for me to give back in some way to the society and community which helped me in ways they couldn’t begin to imagine. When the opportunity arose to volunteer for the next Global Learning Conference which took place in Nashville, I jumped at the chance.

Volunteering gave me the opportunity to “pay it forward” in my own little way. It allowed me to learn from the best and aspire to do more. It took me out of my comfort zone and helped me grow as a person. It marked a personal turning point for me in accepting my diagnosis and helped me to see opportunities once more. Volunteering gave me hope. I was very proud to wear my volunteer shirt. It was time to give back and this was just the beginning!

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