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Today’s episode is about stigmas and speaking your truth. Meet Allie Cashel. 

Allie Cashel is the author of Suffering the Silence: Chronic Lyme disease in an Age of Denial (North Atlantic Books) and is the co-founder and president of The Suffering the Silence Community, a nonprofit organization dedicated to breaking the stigma surrounding chronic illness and disability. Since starting work with STS, Allie has been invited to facilitate workshops and to speak about disability, inclusion, and storytelling at events around the country. She has appeared in a number of global media outlets, including Good Day NY (Fox5) and NowThis Live News, and has presented her work at a United States Congressional Forum.

Our conversation covers

1 the unjust power dynamics in healthcare

2 the struggles in being misunderstood

3 how we can grow stronger from other peoples stories 

QUESTIONS WE ASKED ALLIE:

·      What is your illness(es)?

I was diagnosed with Lyme disease for the first time in 1998 and was in treatment on and off through 2010. I don’t deal with active Lyme + co-infections anymore, but still deal with effects of long-term infection and treatment.

·      What’s your business/initiative?

The Suffering the Silence Community

·      What conditions/audiences do you cater to primarily?

Illness & Disability Community

·      How did your illness shape your career?

It’s shaped my entire career. I have made choices about my lifestyle and work environment based on my symptoms and managing my health.

·      What are some stories you like to tell?

I love to tell the story of starting STS, stories about our retreats, about marchingwithme, and about the power of community!

·      What makes your mission as an “influencer” unique?

We work with so many different demographics of people and really use the power of storytelling and narrative to bring everyone together.

·      What’s your latest project/post/feature that you are most excited about?

Documentary series Trust me I’m sick and new photo series!

·      What are you most passionate about in regard to your work/helping people?

Helping people find their voice.

·      How do/did you handle flares while working?

Patience and lots of rest!

·      If you had one message to send out to every chronic illness warrior out there, what would it be?

There is power in our stories.

·      What was journey like finding the right care? Did you find good practitioners? (Diagnosis, treatment, management, etc.)

I had trouble for years, but have been lucky to work with great doctors ever since.

·      Why do you think the patient-practitioner relationship is important?

You need to be able to advocate for what you need. If you don’t trust your provider, you can’t do that.

·      What does “trust” mean to you in the patient-practitioner relationship?

Open dialogue. Respect.

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