by Carolyn Thomas ♥ @HeartSisters
So far, I’ve heard well-meaning but uninformed people say just about every one of these “helpful” things – so I could pretty darned quickly fill out my own Bingo card. How about you?
Continue reading “Let’s all play Chronic Illness Bingo!”
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!”
by Carolyn Thomas ♥ @HeartSisters
One morning during the last century, I overheard two of my hospital 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, could they? Continue reading “When we don’t look as sick as we feel”
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”
Heart Sisters 