One of the best perks of working with other chronic patients is the authenticity of conversations that come up around the products we create. Nothing makes me feel so seen and valued like hearing my lived experience from someone else’s mouth!
This struck me recently at a brainstorming session about Mighty Well’s newest product, the Self Care Case. The patients in the (virtual) room were sharing what we were excited to use it for. Most were medical supplies like EpiPens, snacks for low blood sugar, medications, spare face masks, hand sanitizer and other necessities for infusions… but we also each carry items with us that have nothing to do with illness. Our favorite shades, sunscreen, makeup, cozy socks.
Illness and disability have the tendency to impact every aspect of daily life. Our morning routine. What we eat. Where we live. What we do to earn a living – or if we can’t work, how we spend our time. How we go places. How we connect with others. How we sleep. Acknowledging this is helpful at times – I recently saw a tweet from @hijade2madre that said “…Disability shapes my everyday life and I’m going to need you to stop making that be a negative.” This side of the equation is so important! Yes, these things impact our every day and do define parts of our identity.
But, like most aspects of our complicated lives, the other side of the equation is equally important: illness and disability are not the only factors that impact our identity! I may be a proud spoonie who doesn’t shy away from making my disabilities public, but that’s not all I think of when showing who I really am. I am also a painter, a writer, a community organizer. I am a mom and a sister. I love birds and trees and gardening. I feel the need for queer spaces as much as spoonie spaces. I’m introverted and sensitive.
I am all of these things and more, regardless of my health status. There are also ways in which my other identities intertwine with my illnesses: I love the cooler seasons because heat is a trigger for my symptoms. Inversely, I still identify as a rugger, despite not being able to play rugby for many years. I used to struggle immensely with this. I remember whole therapy sessions wrestling with whether I could still identify as a “good friend” when I was too sick to show up. I truly believe now that these pieces of our puzzle still exist, even if they don’t all come together right now.
So, who are you? What identities do you hold? What do you carry with you day-to-day, physically and metaphorically? We see you, even the parts that can’t quite make themselves known each day.
Join the conversation in our Friends in the Fight facebook group!
