Once a week, I show up bright and early for my 7 a.m. Toastmasters meeting, just as I have 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 pal and archrival, Jim). But because early morning is almost always my best time of day (e.g. minimal cardiac symptoms), if you met me for the first time only during that very early weekly meeting, you would not guess 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 an invisible chronic illness is like.
That’s why the 2015 Invisible Illness Week is such an important awareness-building campaign, 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 provides 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). Or for this year’s theme My Invisible Fight, help to raise awareness by sharing this on social media like Twitter or Facebook.
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?
- 2015 Invisible Illness website
- “But you don’t look sick…”
- The new country called Heart Disease
- “You look great!” – and other things you should never say to heart patients
- Oneupmanship: you think YOU have pain?
- Living with heart disease – and your whole family
- When we don’t look as sick as we feel
- What (not) to say when you’re visiting the sick
- ‘Healthy Privilege’ – when you just can’t imagine being sick