Invisible Illness Week – seeing what others can’t see

by Carolyn Thomas    @HeartSisters

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?

See also:


4 thoughts on “Invisible Illness Week – seeing what others can’t see

  1. 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!

    Liked by 1 person

  2. 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?!

    Liked by 1 person

    1. 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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