Telling my FA story is a complicated labor of love and advocacy
Speaking about trauma can be retraumatizing. Here's why I do it.
When doing patient advocacy, I’m frequently asked, “Tell me your rare disease story.” My initial response is to sigh on the inside.
Why the sigh? After all, I’m fortunate to have been given a platform to advocate for myself and my disease community. But one reason is because I internally grapple with which aspect of my life to focus on for a particular advocacy effort and its goals.
People who request my story are asking for an elevator pitch about my life with Friedreich’s ataxia (FA). That’s typically a three- to five-minute spiel. Condensing my story is a reasonable ask, and I’m happy to do it to support patient advocacy. However, consider that I was diagnosed 43 years ago. An elevator pitch would require a lot of editing for a person diagnosed six months ago, never mind four decades.
Do I talk about my participation in clinical trials? How I’m an advocate because I hope to improve the outcomes for children with FA? How hard it was for my family to have two of three siblings with the disease? My slow degeneration?
There are so many things to talk about. I’m not known for my inability to share; I sometimes talk a lot. So what should be the focus of my elevator pitch? Without a focus, there’s a good chance I’d ramble on. My rare disease story is long, and I need to know what part will be most effective when I’m advocating.
There is meaning in sharing about me
The story of FA is not a happy one, and it’s sometimes hard to convey. No one has ever asked me to tell it without thanking me and acknowledging that it must be hard.
Some people I know have told me they enjoy telling their FA story, end of discussion. I do enjoy it, but it’s hard for me to think about the dreams and abilities I’ve lost along the way. That’s the second reason for my internal sigh.
Sometimes speaking about my trauma is exhausting, which is normal. As I speak, I’m reliving the day of my diagnosis, when I was just becoming an adult and being told I had only 15 years to live. Telling your story of trauma can be retraumatizing.
I’ll often speak publicly for a fundraiser, some type of media request, or a meeting with legislative staff. But that’s different than recounting my life one-on-one to someone I trust, because with the latter, I know who I’m entrusting with my traumatic story and that they’ll treat it as confidential if that’s what I want.
For me, knowing that medical trauma and chronic diseases like FA are often linked makes telling my story easier. Medical trauma is a struggle I share with many, and it’s something I need to be aware of as I care for my mental health.
On the flip side, telling my trauma story as an advocate for myself and my community is empowering. I feel proud that I’ve journeyed so far and am helping myself and others. I find meaning in telling my story. By doing so, I help others, and helping my FA community is one of my core life purposes.
For me, it’s important to know that I’m sharing with an audience who’ll be receptive. I feel safer sharing my trauma when I feel that what I have to share is meaningful to whoever hears it. While a public audience doesn’t mean I have the confidentiality and respect I get from a trusted confidant, I feel safe knowing that whoever takes the time to read this column or listen to me is receptive.
Many of the people who’ve heard me speak have buoyed me. I know it’s not a case of me simply dumping my experiences on people. They tell me I’m strong, brave, and more. When I hear that kind of praise, I’m not exhausted; I’m energized.
As we approach autumn, I’m reminded that it’s the time of year when various organizations will ask me to talk about my rare disease journey. With a little focus, I can fine-tune my story to best accomplish my advocacy’s mission. I’ll happily tell my tale, knowing that in doing so, I’ll feel empowered, proud, buoyed, and purposeful. For me, that trumps reliving trauma.
Note: Friedreich’s Ataxia 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 another 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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Comments
Elsje Zwart
Hi Jean, Here’s a voice from the past. I read your Defining Yourself story and was moved by your willingness to open yourself up to help others understand better. Thanks, Elsje