Living with Crohn’s
An Actress Faces Invisible Illness Head On
Photo of Shannon smiling in front of a wall of ivy.
Shannon Barry’s Instagram page is a bevy of bright colors, costumes with flower crowns, and selfies that portray an infectious smile, unforgettable red hair, and candid memories with friends and family. One of the first things that you’ll notice about Barry, a writer and actress who’s appeared on TV shows like ‘How to Hack Birth Control’ and ‘Birth Mom’ is that she is living – and loving – life to the fullest.
However, if you dig a little deeper, you’ll also notice that Barry’s Instagram feed isn’t just her highlight reel. Over time, it’s transformed into an online diary where she’s vulnerable with her almost 80k followers about the challenges she’s faced with Crohn’s Disease.
Photo of Shannon in a hospital bed, wearing a hospital gown and mask.
According to the Mayo Clinic, ‘Crohn's disease is a type of inflammatory bowel disease (IBD). It causes swelling of the tissues (inflammation) in your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition.’
Right now, there is no known cure for Crohn’s disease, but there are therapy and treatment options helping patients get to long-term remission. Barry was at first hesitant to share her diagnosis.
“I was so torn between the frustration of no one knowing how much I was struggling, and the privilege of being able to ‘pretend’ I was healthy,” Barry said who was diagnosed in college in the middle of an acting program. “It was terrifying to think that if word got out I would be less considered for parts— I had devoted my whole life (and continued after college) to the pursuit of a craft that was no longer compatible with my health.”
After Barry’s diagnosis, one of the hardest parts was figuring out how – and what -- to tell her family, friends, and even, professors while still processing the news herself. For Barry, Crohn’s was equated to pain, being in the hospital for surgery, and embarrassment. When she didn’t know who to turn to, she created a blog where 1) she saw a gap in the market and 2) to share her experiences first-hand. After first, it was cathartic, but soon, her readership responses were astounding.
“I attached an email to the blog, and I started getting responses from young people going through similar things,” Barry said. Their support helped me overcome any fear of judgement. Posting online became really joyful for me, and sometimes easier than confiding in the people I knew in real life.”
Before and After: How Barry Defines Her Disease
Photo of Shannon wearing a black shirt that says “Cheers to 07 years! Happily Ever After” She’s standing in front of a wall of streamers with a “Happy 7th” banner.
One of Barry’s yearly traditions is to celebrate her ‘Crohnsversary.’ You’ll notice the photos on her page documenting the passing of another year, living with the disease.
“I celebrate it. I’ll never have a last day of treatment. Even in remission I will stay on all my meds with colonoscopies every two years until I die. But I can celebrate the last day I had to suffer in silence. The opportunity to hurt out loud was my greatest gift. It changed my whole life. I felt like I was saved,” Barry said.
If anything, Barry said she split’s her life into two phases: before and after Crohn’s. She explained she’d been going to doctor appointment’s for as long as she could remember. Preventatively, Barry also cut out dairy by age 10 and gluten by the time she was 15 and was scheduling things around the bathroom.
Photo of Shannon sitting in bed with an ice pack over her eyes, eating yogurt.
“I thought it was the way everyone lived and I was just a wimp. But I was lucky that I grew up in a life of privilege. My parents could afford to take me to doctors and pay for invasive tests and holistic medicines out of pocket,” Barry said. “I had a good education and was able to miss a lot of school and still stay on top of my work. And my mother believed me.”
In ‘the before’ Barry continued to self-advocate for herself, but it still took a surgery on a rectal anal abscess plus a referral to a gastroenterologist who diagnosed her months later to confirm that she had Crohn’s.
“Now I had help, and empathy, and a chance at feeling better. I had a whole team of people not only saying “we believe you,” but telling me it was their job to improve my quality of life. The first time a doctor looked at me and said “you shouldn’t have to feel this way” I burst into tears,” Barry said.
Barry was sick for ten years before her diagnosis and other’s doubt, including medical professionals, made her push for an answer. Her advice to someone with a chronic illness is not to compare yourself to a healthy person while taking a day-by-day approach.
“My best piece of advice to someone with a chronic illness is that you don’t have to win every battle to win the war. Sometimes it’s better to let it win for the day,” Barry said.
Photo of a film monitor showing Shannon looking down and wearing a grey hooded sweatshirt.
Barry’s Future: Acting, Writing, and Living with Crohn’s
In a post from early July, Barry posts about an appointment where the medical team asks about her pain level. First she says seven, and then six. She says things are ‘bad’ but you wouldn’t know it. She’s limped her way to appointments, but on the outset, she “looks healthy” – she’s running on a beach, she’s writing again, she’s sharing headshots, and working with her favorite director in ‘Save This Thing’ which is showing at The Buffer Festival in Toronto. Barry is living in pain, but also living her best life as best as she can. She continues to relentlessly pursue acting even if Crohn’s has maybe hindered her career.
“I wonder if my advocacy and openness about it has lost me roles. After all who would want to rely on someone in poor health to do a job that no one else could come in to do that day? It’s scary,” says Barry reflecting on acting. “I think that’s part of why I turned so much to writing. I felt like I didn’t have to pretend to be healthy to be good at it.”
Writing has been an escape for Barry. While auditioning, she’s self-published a book of her own chronicling her experiences, and hopes to one-day publish another more narrative novel.
“It took the loneliest thing that ever happened to me and made it the opposite. It was extremely freeing to have a hobby where I could be myself while I was pursuing a job where I (quite literally) wouldn’t be myself,” Barry said of writing.
Barry was also recently diagnosed with chronic migraine, and had COVID, but it hasn’t stopped her from connecting with people who share a similar experience. She’s a strong voice that shows how to both live and cope with an invisible illness.
“I continued with my poetry and started a TikTok for my own poems as well as book recommendations, and I even self-published a book of my own,” said Barry. “But as soon as I was vaccinated, I was back on set where I feel happiest.”
Learn more about Shannon here!