The Art of Sibling Science
By: Jessica Havens, SibYAC Member (Calgary, Alberta)
What does it mean to be a sibling? It’s like an art and a science. I don’t consider myself a very “science-y” person, but living in a family full of chronic conditions means that I’ve been impacted by science since birth. You see, I’m a triplet with a younger sister. Using the pronoun “our” is second nature to me. Between the four of us we have lived with asthma, eczema, allergies, retinitis pigmentosa, and multiple sclerosis. Both home and hospital seemed to share the same smell of antiseptic, the same hushed voices of adults talking about medical things, and the same silent nod towards my sisters when we realized we would be going to the pharmacy to try yet another medication. I’d say that our documentation of treatments, medication, diagnoses, and experiences have been almost scientific! But that’s where the science ends, since art is a much better way of expressing the different ways we’ve handled sickness and disability in our lives. Every sibling has their own “hypothesis” about their time with their sibling with a disability: Histories that can’t be wrapped up precisely with one conclusion, but flourish a lot better on their own and presented how the artist wants it.
I can’t really tell you what has been going on in my siblings’ minds for the past nineteen, twenty-two years. Each one of us has a period where we were the healthy child, and ones where we were the reason our parents were calling Health Link at 811. Speaking for myself, I wanted to be the sick one. Why? Because I had been present for almost all the same appointments my siblings had attended, and had never felt seen. I wanted the nurses to do more than walk past me in the hallways. I wanted to feel like I deserved to be taking up space in the waiting room, because I too often felt like a nuisance instead. When would they figure out that I was a better note taker than my mom? I could have been rocking it in the room with my sibling for support, rather than sitting awkwardly with a bunch of parents outside.
This feeling was so impactful that I actually went into nursing school, until I realized that it was not the fit for me. (Thank you, nurses! You’re amazing!) I have my own health experience, but what I’ve witnessed from beside my siblings has had the biggest impact on my home, career, mental health, and now, research. Unfortunately, the research world reflects the clinical side all too well: Siblings remain unseen for the most part. Luckily, working with the Sibling Youth Advisory Council (SibYAC) has changed that for me and has shone a light on the experiences of other siblings in Canada. I hope that, like art admired around the world, siblings’ stories could be brought out to the front of the room instead of being kept in storage. I promise, they’ll be good!
To hear more about our stories as siblings, come and check out our Luke’s Legacy Family Research Rounds from April 2021, The Art of Sibling Science!