Have you ever noticed that the photos we share of ourselves are always of us at our best? It always struck me as a sort of falseness, of protecting others from the reality of our bad days. Who are we trying to impress? What are we trying to prove? We gloss over the reality of our situations, make everything less personal and fail to connect with each other on even the most basic level. The largest part of our lives are invisible.
Although everyone knows I struggle with chronic illness, I have spent so much time hiding the reality of my condition that they never see me. When you see me, it is never on one of my bad days. It is never on one of the days that I am in so much pain I cannot get out of bed. On the worst days, I hide. On the okay days, I cover my black under-eye circles with layers of concealer and don my sunglasses. I usually don’t carry my cane, even when I should, in part because I am a little vain. I use the ramp and I take the elevator. I secretly wonder if people are judging me when I press the button with the handicap insignia to open the doors because I lack the strength to do it on my own. I attempt to look well, well for others and well for myself. The truth is that I am tired. I am tired of feeling like rubbish, but I am more tired of feeling invisible.
Yesterday, I decided to show my family and friends what I look like on a day where I am struggling with symptoms. It was not my worst day, but I spent nearly the entire day on the sofa.
This is the photograph I posted, with the following comment:
“I don’t share photos when I am not feeling well, but it struck me that this only emphasizes the invisible aspects of my chronic illness. So, here I am, bonding with my sofa”
I wasn’t sure what kind of reaction I would get, or if I would get any at all. I find that most people struggle with the concept of chronic illness, or illness of any type. But people did react in a positive way. They wished that I would feel better soon and they even said I still looked beautiful. However, the comment that struck me the most, came from my friend Kim, a fellow migraineur. “Thanks, brave friend.”
I needed to read that. I think we all need to know that we are, in fact, making some sort of a difference. We aren’t irrelevant and we are far less invisible than we may believe. In seeking to overcome my own feelings of invisibility and be more authentic, I succeeded in feeling less afraid of letting people see the real me. I think I like it better that way.
If you would like to learn more about inner strength and invisible illness, join in on the #PatientsHavePower Twitter chat, hosted by Clara Health November 2 at 3pm. I will be there, tweeting from my handle, @RieOfLetters.