Most of us look and sound pretty much the way we did before being diagnosed with a chronic and progressive illness that 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 this 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.
6. The hardest part about mornings is: remembering that I can’t go rushing out the door with my hair on fire like I’ve done all my life as one of those insufferably perky morning persons. Early mornings are still my best time of day, though – it’s all downhill from early-afternoon on.
7. My favourite medical TV show ever: What’s not to love about those first few seasons of ER?
8. A gadget I couldn’t live without is: the portable TENS unit that I now clip onto my belt every morning, its little electrode pads taped over my heart to help manage my chest pain. (Also, my laptop!)
9. The hardest part about nights are: never feeling absolutely sure I’ll wake up the next morning. I’m not kidding.
10. Each day, I take: eight pills. (No comment).
11. Regarding alternative treatments, I: am generally skeptical. But I tend to be a tad disillusioned about the state of mainstream medicine, too.
12. If I had to choose between an invisible or visible illness, I would choose: (can’t I pick NEITHER?! Please?) In 2003, I spent four months sporting a bright purple leg cast after falling off my bicycle. During those months, whenever I hobbled onto the bus with my crutches for my daily commute, fellow passengers used to stand up en masse in a big rush of generosity to offer me their seats. I appreciated the overt message that a bright purple cast signifies about the physical state of the wearer: “Handle with care.” People living with an invisible illness don’t usually wear bright purple casts. Maybe we should.
13. Regarding working and career: I miss my co-workers, I miss walking to work in the morning, I miss my professional colleagues in the public relations community, I miss my wonderful little office at the hospital, I miss working in the field that I was pretty darned good at for three decades, and I mostly miss working really hard all day long yet still having lots of energy to meet friends for drinks or dinner after work – without even missing a beat. I’ve always felt so lucky because I have loved every job I’ve ever had. I’m also struck by how the world now continues to spin nicely on its axis even though I’m no longer able to work on all those Very Important Projects!
14. People would be surprised to know: how exhausted I usually feel behind my pasted-on smile, particularly when around groups of people making chatty small talk. That’s me in the centre of this photo, for example (with my late mother Joan and my daughter Larissa) smiling during my mom’s 80th birthday party celebrations despite being very ill with severe cardiac symptoms.
Two days before being hospitalized – still smiling!
15. The hardest thing to accept about my new reality has been: learning how to p-a-c-e myself each day; I now label my days as one-outing, two-outing or (rarely) three-outing days, interrupted by requisite naps and quiet rest periods just to recuperate from the last outing.
16. Something I never thought I could do with my illness that I did was: get through the crippling depression that struck me by complete surprise shortly after being discharged from hospital following my heart attack. As cardiac psychologist (and a heart attack survivor himself) Dr. Stephen Parker reminds us: “A heart attack is a deeply wounding event.” See also: The New Country Called Heart Disease
17. The commercials about my illness: are fear-based (like the controversial “Make Death Wait” ads from The Heart and Stroke Foundation) but I believe they need to be so that women will finally take our #1 killer seriously – which they are not yet doing.
18. Something I really miss doing since I was diagnosed is: staying up late, being among the last to leave a really fun party, hosting my famous charades/potluck dinner parties, doing pretty much anything in the evenings.
19. It was really hard to have to give up: reading fiction – simply can no longer retain enough of the plot from yesterday’s read to have it make any sense to me today. Maddening . . .
20. A new hobby I have taken up since my diagnosis is: jewelry-making, just for fun. Last year, I made myself a special mother-of-the-bride necklace for Larissa’s wedding – including a central pendant made from an embellished 1980 penny (the year she was born).
21. If I could have one day of feeling normal again, I would: grab my coffee mug and take a long solo road trip around our beautiful island in my little green Smart car – without even bringing any nitro spray with me.
22. My illness has taught me: so many things! – mostly about trying not to say YES when I really mean NO (that’s a very valuable lesson to learn!) and also about limiting my very precious time to those who make me feel better, not worse, as much as possible.
23. One thing people say that gets under my skin is: “You look great! You must be doing much better now!” I usually want to respond: “Honey, if you only knew . . .” – but I never do.
24. I love it when people: make me laugh! 🙂
25. My favorite motto/quote that gets me through tough times is: “What is, is!” (as the Buddhists say).
26. When someone is diagnosed, I’d like to tell them: “It’s really bad now, but you will feel better over time, and that overwhelming fear, exhaustion and anxiety you’re feeling now is PERFECTLY NORMAL.”
27. Something that has surprised me about living with this illness is: how truly unbearable it must be for those who live with even worse pain than I have.
28. The nicest thing someone did for me when I wasn’t feeling well was: too many to count! Oh-so-many truly countless gifts of kindness from my wonderful family and friends! But read this for a list of nice suggestions when somebody you care about is sick.
29. I’m involved with this year’s Invisible Illness Week because: too many of us don’t have any outward signs that we are suffering at all, and because we may on occasion look and sound “just fine”, others around us tend to be understandably dismissive of our health issues.
30. The fact that you read this list right to the very end makes me feel: Heard. Seen. Hopeful. Thank you.
This week is National Invisible Chronic Illness Awareness Week.
A version of this post was published here for the 2012 Invisible Illness Week
Q: Are you or somebody you care about living with an invisible illness?