Bethany D’Amico was diagnosed with Ehlers-Danlos syndrome (EDS) in April 2025. She’s been ill much of her life and living with severe pain. The 37-year-old has spent more than a year doing everything she can to help other people going through similar situations on her YouTube channel, Incurably Awesome. “EDS causes eight-out-of-10 pain every day, so I can either cry about it in bed and have a horrible attitude,” she said, “or I can have a great attitude and try to be a warrior about it and go out there and do what I can.” D’Amico says EDS is made up of 13 connective tissue disorders that affect a person’s joints, ligaments, tendons and blood vessels along with the brain and eyes. “Basically, everything in your body,” she said. “What’s happening is the collagen in my body is faulty, so it’s kind of like the glue that holds my body together is falling apart (and) my body is kind of falling apart along with it.” D’Amico tries to live a healthy life by exercising and taking vitamins and supplements. She also takes medication to manage her pain and wears a variety of braces, she says, to hold her body together. But no matter how proactive she is, her body can fail at a moment’s notice. “My body is actually crashing right now,” she said. “The pain is like an eight out of 10, I would say, but I’m used to this amount of pain; there’s only so much that you can do before you stand up and say, ‘Hey, I need to live my life to the fullest and keep pushing forward,’ and that’s how Incredibly Awesome was started.” She’s posted more than 150 videos and has interviewed health professionals and local business owners along with charities and organizations helping people with disabilities. “It keeps me pushing forward. I hope (people living with medically complex issues) feel seen when I’m vlogging,” she said. “And you’re not alone; just always remember that you’re incurably awesome.” D’Amico met Morgan MacNeil online through a social media support group for EDS and the two became close friends. MacNeil says it’s helped her cope with her diagnosis. “That was life-changing. Huge difference in my quality of life since meeting other people who are struggling with the same issues,” she said. “I felt very alone before meeting anyone else, especially when I wasn’t diagnosed.” MacNeil says the Incurably Awesome YouTube page helped her understand what her body was going through. “I don’t think I would have connected a lot of the dots without the resources of people like Bethany on YouTube and on Facebook discussing their health problems, because it is very complicated and stuff can get brushed off that could be really important details,” she said. “And when someone like Bethany is out there saying, ‘Hey, this is all connected,’ it really helps and it really makes you feel like you’re not crazy.” MacNeil has now produced a colouring book to raise awareness of a number of invisible illnesses, with a glossary at the back describing them in more detail. D’Amico and MacNeil say a positive attitude is key to surviving each day while living with EDS and the pain it comes with. D’Amico says the motto YOLO—you only live once—has helped her throughout the challenges life has handed her. “Don’t get me wrong, there are days when I’m bedridden and I am stuck in bed and I’m crying and the pain’s 20 out of 10 and there’s nothing I can do, but during that time, I’m planning my adventures and where to go next,” she said. “Just keep on that positive mindset because as soon as you put negative seeds in your brain, you start entering into that loop of negativity.”
