Liz Trinnear On The Rare Skin Condition That Made Her Who She Is Today
The etalk correspondent and host of CTV's The Launch shares her story.
Photo Credit: Bell Media
I met Trinnear in the fall while she was on a mid-day break from filming The Launch in Toronto. “Everyone’s got something,” she tells me as we sit down to chat. For her, that something has been a rare skin condition called Epidermolysis Bullosa (EB). It’s a genetic condition that affects the skin and mucous membranes and there are different types and severities. (Trinnear has a mild case of EB.) As she describes it, patients with EB are missing a protein layer in their skin that would normally be between the epidermis and dermis layers. This causes the skin to blister, which is both uncomfortable and painful. With severe types of EB, the blisters occur at deeper layers of the skin, causing more serious damage. The most extreme type of the disease can be fatal, according to Debra Canada, a registered charity that supports those with EB and their families.
Living with EB
“They call us butterfly kids because our skin is fragile like a butterfly’s wing,” says Trinnear, who had her first blister when she was just seven days old. “Growing up with it meant limitations and definitely some struggle, but my parents refused to keep me in a bubble,” she says, noting that her parents would let her participate in sports and activities to see what she could do. Sometimes she’d have to stop a sport as soon as she’d started because of her blisters. In a way, Trinnear’s parents let her set her own limits around what she was comfortable with and capable of. “When you grow up with a condition your entire life, you spend so long just trying to be normal. You don’t want to be the odd one out,” says Trinnear. “Kids can definitely be mean. I had a great core group [of friends], but some kids would say mean things. There would be times I would come home really upset. Even adults would say inappropriate things to me. Like ‘what’s all over your kid’s face? She shouldn’t be going in the pool; she’s contagious.’”
Comments like that might make some kids (and adults) avoid attention and can really shake someone’s confidence. That’s why I was curious how Trinnear felt about entering an industry and being on television where there’s such a focus on appearances. While she admits she was initially scared to draw attention to her condition, she never hid it. “I thought maybe this would work against me, like I don’t want people to look at me differently,” she says. “Now, entering my 30s, I am so confident in who I am; I married the love of my life (recording artist Nathaniel Motte). And now more than ever, I want to champion my differences and just say that’s it’s cool to have something going on because everyone’s got something going on.”
Finding confidence through telling her story
For many professionals in the spotlight, Trinnear included, fashion is an incredible way to express personality or even develop a protective armour of sorts. Certain pieces of clothing or jewellery are chosen because of how they make the person feel: confident, strong, beautiful, sexy. For Trinnear, selecting clothing isn’t as simple as choosing what makes her feel best. Certain fabrics or clasps exacerbate her skin condition, either irritating existing blisters or causing new ones. She says she’s been lucky to work with a team, including her stylist Katie Tobin, who help make her comfortable. “There was this one dress a few years ago for the MMVAs that I wanted to wear so badly. I put it on for like 10 minutes in a fitting and it already irritated my skin. [Katie] was like, ‘I got you.’ So, she lined the dress with silk,” Trinnear tells me. “It’s incredible to just be confident and comfortable with what you have, voice it, and then people around you are going to help you out,” she says. “It’s like this whole world opens up when you just start telling your story.”
Of course social media has played a role in telling her story. But, as we know, one square image doesn’t always tell the whole truth. “That’s the funny thing with social media,” says Trinnear. “People are sweet and leave comments like ‘you’re so pretty’ and ‘you look so great.’ There was one day when I was really blistered and thought, ‘gosh, if only people knew that under this sleeve is a blister.'” So she took a selfie and posted it on Instagram. It ended up being one of her most liked photos, she says.
View this post on Instagram
No filter, just life. I’m not posting this for sympathy, I’m posting this to share with you something you often can’t see. I was born with a rare skin condition called Epidermolysis Bullosa. At just 7 days old I got my first blister and since then it’s been a journey. Some days are worse than others and simple things like walking or shaking someone’s hand is excruciating. I have a mild form of the condition and I am fortunate to live the life I do. This post is not a “woe is me”, this post is a reminder that EVERYONE HAS SOMETHING. Be kind. We’re all humans and some of our problems show and others don’t. You never know what someone is going through or what their daily struggle is. Life isn’t about filters. It’s real.
Creating awareness of EB
Recently, Trinnear says she was connected with a group called Mia Thrives. “She’s this amazing three-year-old, and I hope Mia can see me and see that EB didn’t hold me back. I got to learn on my own that I couldn’t do some things and then I made adjustments.”
And while Trinnear is happy to share her story of living with EB, she’s quick to clarify that everyone’s experience is unique. “There are so many worse layers to this condition; I’m in the mild zone,” she says. “I never want to feel like I’m dwelling on my childhood when I know other kids are going through much worse, but I do want to spread awareness. I’m in this incredible position where I have a platform to share my story. I’m embracing that and trying to share and use my platform as wisely as possible.”
Be yourself and be proud
That platform is about to get bigger as she hosts the second season of The Launch, where 30 hopeful artists will compete for their chance to record an original song. “I’m just a ball of nerves; I’m freaking out for them,” Trinnear says of the contestants on this season. And she knows exactly what it’s like to put yourself out there, having gone through a very similar experience roughly 10 years ago when she auditioned for and won the 2009 MuchMusic VJ Search. “My biggest piece of advice is be yourself,” she says. “I know that’s sooo cliché and so annoying to hear but when I was in the VJ Search I remember thinking ‘I’m not winning this thing but at least I’ll be myself,’ and then I got the job! At the end of the day you have to be proud of what you did in that room and know that you stayed true to you.”
It’s clear during our 30 minute chat that Trinnear is at peace with her condition. What could be seen as a vulnerability, Trinnear has turned into a strength. She doesn’t let it hold her back; in fact, she wouldn’t change things even if she could. “It sets me apart; it makes me who I am. I always say that I would never change my childhood. It has crafted me in so many ways as far as my personality and how I treat people and how I connect with people,” she says. “I’m very grateful for it. That seems so weird, but I am.”