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.
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 about mid-afternoon on.
7. My favorite medical TV show is: NY Med, although I am rarely able to stay awake late enough to see it.
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: nine pills. (No comment).
11. Regarding alternative treatments, I: am generally skeptical. But I tend to be a tad disillusioned about the state of allopathic (mainstream) medicine, too. See my other site, The Ethical Nag: Marketing Ethics for the Easily Swayed for evidence of said disillusionment.
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, fellow passengers on my commute to work 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 using my brain, 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, and I mostly miss working really hard all day long yet still having lots of energy to meet colleagues for drinks or dinner after work – without even missing a beat. 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.
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 great 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. I made 63 necklaces to bring down with me to Mayo Clinic in 2008 (as the first Canadian ever invited to attend the WomenHeart Science & Leadership Symposium there, I figured these might be fitting souvenirs from Canada for my American heart sisters!) Last month, 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: 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 is 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. But 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 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: when a friend came over to plant all my summer bedding plants – plus oh-so-many other truly countless gifts of kindness from my wonderful family and friends!
29. I’m involved with the 2012 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.
Next week is National Invisible Chronic Illness Awareness Week. Find out more.
k
Q: Are you or somebody you care about living with an invisible illness?
k
Heart Sisters 
I would love to have a copy of this to fill in and post for friends and family!! My invisible illness is Gastroparesis. I’ve lost 60 lbs. and everyone says you look great. I look in the mirror and see bones and a lot of loose skin. Hubby still tells me I’m beautiful!
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Margaret, why not fill this out for your own diagnosis? I was surprised by some of my own answers, to tell you the truth – an interesting exercise for all of us to do! PS Your hubby is a real keeper! 🙂
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I did it. And yes, he is most definitely a keeper. We’ll be married 33 years next month!!
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One more thing: I recently herniated a disc and due to the nerve issue, used a walker to lean on as I walked/stood. I used it both in and out of the house. As a “looking good” 58 year old, I was astounded at the wonderful and considerate treatment I got from everyone ~ from kids to adults to whomever. My problem was now “visible”. It kind of felt great to have people be nice and considerate to me, though I certainly FEEL too young for a walker.
This is why invisible illness is so isolating and people don’t perceive the debility.
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Hmmmmm….. A walker …… That’s even better than a leg cast or a neck brace! It’s interesting that it takes a walker to observe how “nice and considerate” people can be. Shouldn’t we all be that way to others – walker or not? Hope your back continues to get better!
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Thanks for these 30 things Carolyn: they really resonate for me. Though not experiencing the damage that you describe, nevertheless I’m about to be medically retired from my (used to be) busy and demanding job following last autumn’s heart attacks.
It’s a tricky balancing act to let people / colleagues know that you’re still ‘a player’ whilst needing allowances to be made. I’ve copied your piece to my boss and my deputy because I think you do it beautifully & eloquently.
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Hi again Lorraine – there’s such a huge difference, psychologically, between choosing to retire 🙂 and being “medically retired” 😦 Good luck to you!
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Carolyn,
We’re kind of twins (unified) at MVD. You’ll never know. I EVEN just thought about doing jewelry making lately!! This is spooky.
All your answers were spot on to those questions – xoxxo
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I like the idea of you being my twin, Mary! Thanks so much ….
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Thanks!
Your blog is a continuous gift to the heart sisters community! I will keep you in my prayers. I can’t add to anything said except that talk therapy, even blog talk therapy, is good for the soul. It doesn’t really solve anything most of the time, but it’s a spiritual bath of sorts when women talk and share with one another.
RL
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Blog talk therapy – that’s a good description of what we do here, isn’t it? Thanks Ree.
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Thank you Carolyn on posting on behalf of the rest of us, the looking good part really drives me up the wall! Some of the ones close to me even have a difficult time accepting that I am chronically ill, now I understand why, used to take it personal before.
Sonia
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No wonder we put “looking good” as such a high priority in life! In our culture, women are socialized to be valued based on our appearance, and that starts from early childhood. I remember a day shortly after my heart attack when I was feeling dreadful but had a doctor’s appointment – and was having a big debate with myself about whether I should wash my hair or not before I went (hadn’t washed it in DAYS and looked a fright!) Guess I didn’t want the doctor seeing me looking as bad as I felt! Crazy…. Thanks for sharing your perspective, Sonia.
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Judging by the many comments here, this topic has hit the ‘heart’ of all people with chronic but invisible diseases. And Carolyn has put another entry up—-“I Care About You”.
Thank you.
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Thanks for the plug, Cave! 🙂
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Ok.. I have to jump in on this one 🙂 First, beautiful.. thank you for sharing.
I have received more incentive from this site… from all of you.. Thank you.
Now in my life 🙂 I have discovered that you get further, not “telling” people you are ill, But Living like you’re dying. We all hope and pray for the extra years…but what if today was it?
What would I have done differently? What changes would I have made? What what I have said to the people I love? or hate? If it was all coming to my passing through that door (and there is a door)… what would I do?
Well, That is deep thinking. BUT, I make a pot roast every Sunday, It makes my house smell like many generations (on Sunday) before me and I like that. But last week my child ask me, Can you make a Sunday stuffed turkey..like on Thanksgiving? Someone said “No. That is a traditional dish, you can’t make that on just any ol’ Sunday” WHY?!! What am I waiting on?
Guess what I am having tonight? and guess what? I am having it on ? My best china!.. the ones I never use…. With sweet potatoes and green bean casserole 🙂
Yum!! LIVE!!!!
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Oh, Rachel – so beautifully put. That’s it – I’m doing a roast turkey next Sunday for the family, Thanksgiving or not!
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Thanks for an excellent reminder on what is actually going on under the facade of “OK, thanks”. Don’t forget to speak plainly so we don’t forget!
Gail
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Yes, Gail! But speaking plainly can sound so much like whining that I think we tend to minimize it unless absolutely necessary.
XOXO
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Your 30 point essay was wonderful – I could probably ditto most of your points. But we can say that our lives are far from boring!!
I live with Coronary Artery Disease (1 major heart attack and 2 other lesser ones) and Pulmonary Sarcoidosis and Type 2 Diabetes. And yes – people always say how good I look (as I am struggling to speak, breath, and walk at the same time – lol).
All of these are invisible illnesses if you don’t count my oxygen tank. But I understand that they desperately want me to not just look good but also feel good and be well because illness frightens them and they feel very uncomfortable and helpless when it has to be acknowledged. We humans tend to always fear what we don’t understand.
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You are SO right, Francene! People around us want and need us to be “okay” again; it’s very distressing to see somebody we care about who is suffering. I wrote about the phenomenon of relief experienced when seeing a patient who “looks good” here. Thanks very much for your comment – keep up the speaking, breathing and walking!
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Carolyn,
I celebrate your candor and your spirit. I mourn your loss. I celebrate how you have turned your loss into a gift for others.
with love,
j
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Thanks so much, Judy/Judith. This was an interesting exercise – and surprisingly moving for me. Most of this stuff I rarely think about or talk about these days in the daily round of just getting on with life. Try it and see how you’d answer . . .
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And she did! Here’s Judy/Judith’s own list called “30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW & didn’t know you wanted to know“! 🙂
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Thank you for sharing, I feel the very same way… It makes one feel ashamed or that we have something to hide, hard to explain
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And yet we don’t have anything to hide or be ashamed of! We certainly wouldn’t feel that way if we wore a leg cast or a neck brace or some other sign of visible illness/injury, would we?
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❤
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Thanks Dr. S
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Great! blog! It’s the comments you look so good! lol like we are going to go out unwashed, unbrushed hair, and they are only seeing us on a good enough day to get out and about! It’s not like we are going to go around moaning loudly from the pain we are in or have a pain filled face!
x
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Thanks Fiona – I was reading an online discussion recently about whether or not women living with invisible illnesses should even wear makeup. One woman wrote that when she ‘puts her face on’ before a doctor’s appointment, he invariably greets her with “You must be feeling better – you’re looking so good!”
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Yes, it’s interesting the difference you experience from your doc when you finally get there; you were just too ill & drained to make any effort to look “ok” – lol – at the time you look fine but in so much pain that you start silently crying in front of them when they have no answers for you, that was an interesting experience, i think i actually worried the doc! i think we are sometimes too brave for our own good.
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Another great reminder to me that I’m not the only one!
A while back I posted another of your (similar) posts to an online forum (another illness) and a woman who seems to be a very angry person posted back:
“I’ve seen similar things written for other conditions and I actually think it encourages self victimization.”
Sigh.
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Ouch.
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PS Hi again Cave – I’ve been thinking about that reaction from the “very angry person” and the more I think about her, the more pissed off I feel. That stiff-upper-lip “I’m fine, just fine” crap is what keeps many women from coming forward to get help even when life-threatening symptoms arise. In fact, the Yale Heart Study is currently investigating this strange “treatment-seeking delay behaviour” to try to figure out why we’d rather be dead than make a fuss (or, as your angry friend might describe it: self-victimization!) Okay, end of rant!
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Course we never think it’s WE who would be dead. It’s just the other guy. Guess that’s why we might do it. I’ve certainly caught myself in that crazy thinking!
Another great column Carolyn!
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For some strange reason we women seem to think sometimes that we are not worth having a fuss made over us! We really need to get out of that kind of thinking!
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LOL, Carolyn! (about the ‘angry person’) She pisses me off too!
BTW—- I have to admit that I finally watched that video (Just a Little Heart Attack) on your home page for the first time last week! How great that is! Thank you.
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