It’s a bug’s life for this patient influencer

Like many people with autism, Nicole Parish has a special interest – an intense focus on a specific topic. In her case, it’s insects. She explains the challenges of living with autism – from recognising sarcasm to avoiding meltdowns – through the lens of her passion for bugs.

📷: Nicole Parish

“You can decorate based on your special interest,” she tells her followers on TikTok, gesturing to a wall mounted with giant fungi. Parish, AKA @soundoftheforest, usually films in front of another wall covered with pinned butterflies, moths and spiders. Sometimes – like a caterpillar in a cocoon – she dangles from the ceiling in a silk sensory swing with just her head protruding.

“It’s kind of like a hug without the human contact,” she says. Parish intersperses stories about sensory overload, social awkwardness and autistic burnout with facts about violin beetles, giraffe weevils and atlas moths. Parish’s informative, engaging and often funny films have garnered her 2.4 million followers on TikTok. She is part of a growing breed of young patient influencers attracting large audiences on social media. Patient influencers are people who share personal health stories using channels from Instagram and Facebook, to the Daily Mail and Good Morning Britain to raise awareness and support others.

Unlike traditional influencers who have left audiences jaded with too many sponsored posts, patient influencers are on the rise, creating loyal communities as they consistently share authentic, relatable and relevant stories. Nine in ten patients say these communities play a ‘somewhat’ to ‘extremely’ important role in their health decisions, according to one study.

For pharmaceutical companies and the agencies that partner with them, patient influencers provide valuable insights into the day-to-day realities of living with a condition. They also provide a reality check on what it takes to engage with people in this era of digital content. Influencers like Parish are a reminder that if you want to ignite credible conversations in partnership with patient influencers, then safe, corporate, colour-by-numbers content is no match for bold, surprising, ultra-personal storytelling.