You know what I’m talking about.
The moment when you adjust your collar to hide your port, never bring up your medical needs in work or social situations, or hide that mountain of pills in your bathroom underneath the sink and out of sight of judging guests.
Being a patient with a chronic illness isn’t always pretty and it’s not always a story you want to share with others. It’s personal, private, and it’s enough that people are always talking about how lazy, inconsiderate and inept people with disease like chronic fatigue are these days.
Wasn’t there just an episode on Boston Med last week about a girl with mitochondrial disease being a hypochondriac? I mean, sure in the show, she was, but what’s that supposed to do for the actual patients in that rare disease community?
Then you’ve got Yolanda Foster from The Real Housewives of Beverly Hills getting called a perp of Munchausen By Proxy. What the hell is that? The woman has Lyme disease and she’s being tackled for trying to wake up each morning and live despite her symptoms.
It seems likely that people will inquire why, if we’re so smart, did we let something like this happen to us? Accusing us of overmedicating or taking overly drastic measures to get treatment. Their words imply blame for not taking the treatment route that they feel is the right solution.
I’m sure many of you can relate.
What’s your story? What moments do you feel the most ashamed and what do you do to help yourself find your emotional balance again?
Looking for your responses to feature in my new book. Feel free to post your comments below or email me at IlanaWrites@gmail.com