It’s Invisible Illness Awareness Week!

Dearest heart sisters,

If you live with an invisible illness (as almost all heart patients do), this is your week, no matter what your diagnosis.  I encourage you to visit the Invisible Illness Week site, all about those of us living with serious health conditions that nobody else can see. It’s an annual educational campaign about how often illness is utterly invisible to others, how to be sensitive to those living with these challenges, and how to learn from their unique experiences.
Continue reading “It’s Invisible Illness Awareness Week!”

When we don’t look as sick as we feel

by Carolyn Thomas  @HeartSisters

One morning, I overheard two of my co-workers chatting over coffee at the hospice palliative care unit where we’d worked together for several years. They were talking about one of our colleagues who had been off work on an extended sick leave. One said to the other:

“Oh, I saw ____ the other day. She was out riding her BICYCLE!” 

The way she said the word ‘bicycle’ stuck with me, tossed off with that pared down judgmental tone we use when what we really want to say is: “Hmph… Must be nice!”  The tone somehow implied that anybody who can hop on a bike and toodle around the neighbourhood on a sunny day couldn’t be THAT sick after all. Continue reading “When we don’t look as sick as we feel”

30 little things about my invisible illness you may not know

by Carolyn Thomas

It’s Invisible Chronic Illness Awareness Week and this year, the campaign organizers have provided a 30 Things template for bloggers like me. Most of us look and sound pretty much the way we did before being diagnosed with a chronic and progressive illness which may not be at all visibly obvious to the outside world. This can then make it challenging for those around us to ‘get it’ when we are struggling with debilitating symptoms. So with the hope of helping to expand public awareness into next week and beyond, here goes:

1. The illness I live with is called: Inoperable Coronary Microvascular Disease

2. I was diagnosed with it in the year: 2009

3. But I had symptoms since: I survived a “widow maker” heart attack in May 2008 (which was two weeks after I was originally sent home from the E.R. misdiagnosed with acid reflux – despite presenting with textbook heart attack symptoms like crushing chest pain, nausea, sweating and pain radiating down my left arm). Later emergency treatment finally confirmed a myocardial infarction (heart attack), but debilitating cardiac symptoms continued after I was sent home – and that meant more tests, more hospital procedures, more meds, more treatment – until my microvascular disease diagnosis.

4. The biggest adjustment I’ve had to make is: not being able to continue working in my public relations career due to ongoing cardiac symptoms; for me, this has also meant the demoralizing experience of needing to apply for (and then learn to live on) a disability pension.

5. Most people assume I’m: my same old self. I am not.  Continue reading “30 little things about my invisible illness you may not know”

“But you don’t look sick…”

happy face hats

by Carolyn Thomas  @HeartSisters

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. Continue reading ““But you don’t look sick…””