There have been some days when it would have been ever-so-handy if I were sporting a cast on my arm, or crutches, or a big fat neck brace. Now that would be a realistic indicator to the world ‘out there’ of how it can sometimes feel to have Coronary Microvascular Disease, a particularly debilitating form of heart disease.
But instead, every day some of us wake up, shower, get dressed in our usual clothes, comb our hair in the usual way, floss and brush just like we have always done – and go about our day, looking pretty much how we’ve always looked.
Few people ‘out there’ who don’t know us would even guess that we live with significant heart disease. Few would guess that I’m still unable to work at the PR job I love, for example, or that even the smallest outing with family or friends takes every bit of stamina I can muster, or that I need to nap like a pre-schooler every day just to manage the ‘new normal’ that has become my life.
Few people ‘out there’ know how merely participating in a couple hours of normal, pleasant conversation with friends over coffee can reduce me to a weak, shaky, frazzled heap by the end of our visit because of the sheer mental effort now required. Mind you, I’m a heap with a happy face smile pasted on, of course…
Few people ‘out there’ know how living with ongoing bouts of frightening chest pain, shortness of breath and crushing exhaustion requires a full day of recovery physically and emotionally after each episode.
And they don’t see this, because at least on the exterior, I look and sound pretty much the way I’ve always looked and sounded.
My longtime family doctor calls this my “PR curse“ after 36+ years working in public relations. In the wonderful world of public relations, it doesn’t matter if you have a migraine or a broken leg, you get to be pretty good at slapping on those happy face smiles before tapdancing out to run press conferences or MC fundraising galas or spontaneous media interviews. But I believe you don’t need 36+ years in PR to be an expert at the happy-face-smile-pasting game.
Sound familiar? The subtle message from others: “But you don’t LOOK sick…” is why I like visiting the unique website of the same name – and especially the site founder’s bang-on essay, “The Spoon Theory“. Christine Miserandino wrote this about her own lupus diagnosis, but her words will likely ring bells for many people facing any chronic and progressive diagnosis.
Don’t get me wrong, my heart sisters. There may be some therapeutic value in facing the world ‘out there’ with that happy face smile firmly in place on some occasions:
“Do I sing because I’m happy – or am I happy because I sing?”
- “You Look Great!” – and Other Things You Should Never Say to a Heart Patient“
- Looking Good for Your Doctor’s Appointment: Oui ou Non?
- A Heart Patient’s Positive Attitude: a “Crazy, Crazy Idea”?
- “Smile, Though Your Heart is Aching”: Is Fake Smiling Unhealthy?
© 2009 Carolyn Thomas www.myheartsisters.org