I think it is safe to say that every one of us with chronic illness has heard the phrase, “Don’t let your disease define you!” I also think it is safe to say that this is easier said than done.
From the Oxford Dictionary: define: “to mark out the boundary or limits of”
Read that definition again — define: “to mark out the boundary or limits of”
Last week, I was asked not to bring my own allergen-free food into a restaurant where I was joining friends for dinner. Boundary.
A few days ago, I opted out of a reunion with old friends because I knew I wouldn’t make it through a loud concert without having flares of both Meniere’s disease and dysautonomia. Limits.
Yesterday at work, I couldn’t go to the employee appreciation lunch because the room was full of latex balloons that would have caused an anaphylactic allergic reaction if I attended. Boundary.
Today, I left the store without my gallon of orange juice because after five minutes of standing in line, my heart rate was so high I couldn’t stand up any longer to keep waiting in line to pay for it. Limits.
It’s easy to see how quickly these boundaries and limits add up and start to create an identity. So, in an effort to fit in, I used to find myself trying to hide these times when my diseases so obviously defined me. I would pretend I wasn’t hungry and sit with my friends while they ate their dinner instead of explaining to the restaurant staff. I would make other excuses for not being able to go to concerts. I would tell my coworkers I had an important phone call and that’s why I couldn’t come to the lunch. I would act like I just decided I didn’t want the orange juice after all.
But after years and years of these limits and boundaries, something clicked. Now, I realize that when I let my chronic illnesses shape my identity, instead of covering them up with my own definitions of who I think I should be without them, life is so much easier. Because it is in the moments of trying not to let my illnesses define me that I feel the least authentically myself. In other words, I feel the most authentically myself when my illnesses play the lead role.
That’s because my diseases do define me. They dictate everything I wear, including the alert bracelets on me 24/7 that literally label me with every disease I have. They dictate everything I eat and buy, everyone I interact with and everything I do. They dictate every decision I make and every action I take. They determine which friends I make and which ones I keep. They determine where I go and how I get there. They influence every part of every day. But when I make the conscious decision each day to let my illnesses define me, I take control back. Suddenly, those boundaries and limits become open gates and launching pads. Suddenly, I get to show people what it looks like to live with six invisible illnesses, how those six invisible illnesses make me who I am, and why that will never be a bad thing.
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You can see more of my writing on Instagram: @_batteries.not.included :) I navigate the world every day with the trials and triumphs that come with having mast cell disease, Meniere’s disease, Ehlers-Danlos Syndrome, dysautonomia (Inappropriate Sinus Tachycardia and Postural Orthostatic Tachycardia Syndrome), Polycystic Ovarian Syndrome, and other comorbidities, as well a being a service dog handler. I want to teach the world how to look past the invisible and learn to see the unseen battles we fight with chronic illness. More than anything though, I love writing about chronic illness because of this quote from one of my favorite writers and speakers: “The two most powerful words when we’re in struggle: me too” – Brené Brown
jenna-o