Breaking the Silence: An Evening of Storytelling in Chicago, Illinois was the seventh event in our 2016 speaker series, following locations such as Philadelphia and San Francisco, as STS worked to create opportunities for members of the chronic illness family to connect in-person and share their stories.
The event, held on July 27th at the Lincoln Belmont Library, included more than 7 speakers, representing all types of chronic illness. Speakers came from both near and far, including Chicago natives alongside individuals from as far as New York and even Austria. And the topics of the stories were just as diverse as those sharing them.
Allie Cashel, co-founder and president of STS, as well as emcee for the event began the evening by sharing her own short story, discussing how difficult it was for her to talk about Lyme Disease when she was first diagnosed. “When I was younger, I really didn’t have the strength to tell my story.”
When she and her mom would visit an IV clinic, they would mostly keep to themselves. That was, until an older man with cancer started visiting the clinic and sitting next to them.
“He asked questions, engaged with us, and in some way became an audience for our story...It was probably the first time we both were really open about what was going on with us.”
In sharing this vignette, Allie helped the speakers and the audience to understand why they were there that evening and the importance of both speaking up and listening. “It is inspiring to see so many young people ready to speak up about their experiences, but it’s also inspiring to see audiences ready to listen to them.”
Allie then introduced the first speaker of the night, Katy Brennan, a young woman from Illinois who is a self-described advocate and patient within the world of chronic illness. Diagnosed with Ehler-Danlos Syndrome in January 2016, Katy now battles multiple conditions, including POTS and hemiplegic migraines.
She is also an intern with STS and was the coordinator for this event, the driving force behind bringing the speaker series to Chicago. “Chicago is one of the largest cities in the United States, and I know so many people in the area who were connected, but had never met one another...This was a great opportunity to bring a community and network together.”
Katy also recognizes the importance of breaking the silence surrounding chronic illness and the opportunity this event would provide to do so. “I think that people are too afraid to address disability or chronic illness most of the time. Able bodied people see it as a taboo subject...The truth is that there will be hardships in life, and it is okay to talk about them.”
“It is so important to destigmatize the subject for both the sanity of the people suffering, but also so that they can receive proper treatment,” Katy shared. She lead by example, speaking about the importance of strength and perseverance and how those two traits helped her through one of the hardest years of her life.
At one point during the event, an attendee became a participant, when Alex Pagura, a young man with Hypermobile Ehler-Danlos syndrome, inspired by the stories he was hearing, chose leave his seat to share his own. He shared how illness hel
ped him discover his love for art and music, including his inspiration to complete a photography project and e-book that documented how individuals living with chronic illness cope with their condition.
Effie Koliopoulos was one of the final speakers of the evening. She has lived with Rheumatoid Arthritis for the past 15 years and currently blogs about her experiences, helping to spread awareness about arthritis related conditions.
“I wanted to be a part of this event because not only is it an amazing concept, but I was ready to let my story be known,” she said. “I was nervous at first...but I'm glad I pushed myself out of my comfort zone and did something new!”
Effie spoke about her recovery from total knee replacement at the age of 29 years old and centered on the importance of overcoming obstacles. “I was hoping to have people take away the notion that where you are now, someone else has been before you.”
Allie ended the night by pointing out that the goal of this event was to not just tell stories and speak, but, more importantly, to listen. “In this world we’re in now, whether it is illness or another high stakes social issue, we are not listening to each other enough. And it’s really special to take moments like this [to do so].”
Effie said it best. “Without sharing stories, there's no understanding. And without understanding, there's no compassion and no empathy.”
“There are so many issues we are not talking about because we’re scared of what the other person is going to say. And so that’s why it’s exciting to have this opportunity to come together and just listen.”
You can check out our live stream of the event, and catch some of of the contributing stories here.