I showed up bright and early for my 7 a.m. weekly Toastmasters meeting, just as I had been doing every week for 28 years. (I did miss several meetings after being freshly diagnosed with a heart attack in 2008 – the year that, sadly, I lost the coveted Rise and Shine Attendance Award to my archrival, Jim). But because early morning is almost always my best time of day (e.g. minimal cardiac symptoms), if you’d met me for the first time only during that very early weekly meeting, you would not have guessed that I live with something called inoperable coronary microvascular disease (MVD).
I don’t wear a neck brace or leg cast or any other visible sign that something is wrong. Because this debilitating heart condition is invisible, I often look and sound relatively “normal”. And if you’re lucky enough to live with healthy privilege, it can be almost impossible to understand what having any invisible chronic illness is like.
That’s why the Invisible Illness Week was such an important awareness-building campaign when it was launched in 2002 by Lisa Copen. I’ve never met Lisa in person, but we have this in common: each of us lives with a medical diagnosis that may not be at all visible to others. In Lisa’s case, she was diagnosed at age 24 with painful rheumatoid arthritis. I first learned her name in 2009 when we were both honoured by Our Bodies, Ourselves of Boston as Women’s Health Heroes, two of 20 inductees from seven countries acknowledged for women’s health activism in our own communities.
Her Invisible Illness Week website provided a platform and inspiration for anybody living with any form of chronic illness. Drop in and visit for some inspiration of your own, find lots of useful resources from other patients in the same boat, write your own 30 Things About Me meme challenge. (Here’s one of my own 30 Things exercises as an example, FYI).
If you care about somebody who lives with an invisible chronic illness, I think you’ll learn more than you already know about what that reality is like for that person. And for a terrific overview about life with an invisible illness, read the classic essay The Spoon Theory by Christine Miserandino on her brilliantly-titled website But You Don’t Look Sick.
Q: How has having an invisible illness impacted your work, family or social life?
NOTE FROM CAROLYN: I wrote more about adjusting to becoming a heart patient in my book “A Woman’s Guide to Living with Heart Disease“. You can ask for it at bookstores (please support your local independent bookseller!) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher Johns Hopkins University Press (use their code HTWN to save 30% off the list price).