by Carolyn Thomas ♥ @HeartSisters
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?
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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).
See also:
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
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Heart Sisters 
It’s odd how compliments can rub you the wrong way in such situations. After my heart surgery, everyone kept telling me how great I looked and how well I was doing, but rather than cheering me up it sometimes aggravated me — like they were somehow implying that because I physically looked good (relatively, anyway) that obviously meant I was doing well and felt fine. Which was not always the case.
It’s also rough when you’re recovering and seem to be making good progress and people accidentally overestimate your strength and energy levels. Just because I could walk on my own without collapsing didn’t mean I was ready to speed-walk through midsummer heat or stay up all hours of the night partying. On the other hand, being underestimated is frustrating, too.
As with so many things in life, communication is key. Awareness campaigns and events like Invisible Illness Week certainly help too — thanks for sharing!
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So true, Kim…. Psychologist Dr. Ann Becker-Schutte describes this reality as being when “someone who is casually looking at you might not be able to understand the effort that goes into a ‘normal’ day. They don’t see or understand because they have some degree of what I am calling ‘healthy privilege‘.” See also:“You look great!” – and other things you should never say to heart patients
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Reblogged this on Journey of a Tired Heart and commented:
For the first time since my dilated cardiomyopathy (DCM) diagnosis in March of this year, someone said to me, “You don’t look sick”. I think it was meant as a compliment, but it shook me nonetheless. I wanted to say “You didn’t see me trembling with exhaustion as I tried to put on makeup after the massive task of taking a shower and rubbing some styling crème in my hair,” but I didn’t. I smiled and thanked him and wondered if he was thinking that I should be at work and not trying to get disability.
I’ve been guilty of doing exactly that; looking with contempt at someone who showed no outward signs of disability yet taking advantage of disability benefits. Be careful how you think of others…better yet, don’t judge them at all. (Romans 2:1).
Throughout my life it seems that whenever I’ve passed along my obnoxious judgment on someone else, that very cross became mine to bear. Talk about heartfelt repentance! What I wouldn’t give if everyone who has to deal with “an invisible illness” could enjoy the nonjudgmental support of friends and family, and the kindness of strangers. Please keep this in mind as you go through your week and encounter other people in your life.
Wouldn’t that make the world a better place indeed?!
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Yes! Stifling those “obnoxious judgments” about others would indeed make the world a better place! Those kinds of snap judgements about others come from living with healthy privilege. I’m now embarrassed by some of the comments (or snarky thoughts!) I’ve had over the years about others with chronic illness, while I too was living within the ignorant luxury of healthy privilege!
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