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?
Fast forward from that morning to the months following my heart attack.
Almost immediately after being discharged from the CCU (the cardiac intensive care unit), all I wanted to do was to feel “normal” again, and going back to work seemed the most obvious sign of normalcy to me. But during my part-time graduated return-to-work trial, I felt horrified to discover that, because of alarmingly persistent cardiac symptoms, I was simply no longer able to function in my public relations role. It was a living nightmare.
Four months after my heart attack, and after another hospitalization and more cardiac procedures, I had to leave work on an extended medical leave. Although I didn’t know it at the time, it was for good.
While I tried to get my brain wrapped around this demoralizing and humiliating turn of events, the memory of that overheard workplace chat and the dismissive way my co-workers had spoken about our friend on sick leave never left me.
So every time I had to walk into the village to buy groceries or pick up meds at the pharmacy, I secretly hoped I wouldn’t run into somebody from work who might later tell one of our colleagues: “I saw Carolyn the other day. She was out WALKING in the VILLAGE!” – using that same judgmental tone that implies anybody who can stroll outside and toodle around the neighbourhood on a sunny day couldn’t be THAT sick, could she?!?
This is what living with an invisible illness is like for so many of us.
Dr. Ann Becker-Schutte is a counseling psychologist in Kansas City who explained the problem with invisible illness like this:
“It means someone who is casually looking at you might not be able to see the level of pain you experience. And they probably don’t understand the effort that goes into a ‘normal’ day.
“They don’t see or understand because they have some degree of what I am calling ‘healthy privilege‘.”
For many chronic illness diagnoses (and almost all mental health ones), we often look pretty much like our old selves. We rarely sport a neck brace or a leg cast or some other visible reminder that something awful has happened to us. So others may believe that if we look the same, we must be the same. Right?
Wrong.
What they may not understand is how long it has likely taken us to look “the same”, how much effort and exhaustion this has meant, what we’ve gone through just to brush teeth or run a comb through stringy hair – and don’t get me started on taking a shower or maintaining this pasted-on little happy face in order to keep up a pleasant facade of normalcy. (See also: “You Look Great – and Other Things You Should Never Say to Heart Patients“)
The late cancer patient and blogger Lisa Bonchek Adams once wrote about this common phenomenon, reminding us:
“Just because people see me in public they shouldn’t assume that I’m back to normal or ‘feeling great.’
“It is hard to explain that it might have taken me all day to get the energy up to do that one errand or have that one coffee date with a friend, that I’ll need a nap and to rest for the rest of the day after doing it.”
What I similarly try to explain to friends and family is that relentlessly managing pain, exhaustion, shortness of breath or other debilitating symptoms requires a delicate daily balancing act of time management.
I’ve learned that I can have good days and bad, or good hours and then bad – interrupted by naps and doses of nitro spray (the heart patient’s friend).
I’ve learned that very early mornings seem to be best for me. It’s when I can write, think, exercise, and experience several “normal” moments.
I’ve also learned to schedule what I call “one-outing” days or “two-outing” days, or (rarely!) “three-outing” days, each outing separated by enough time to rest – and almost always a full day to recover. When I forget to p-a-c-e myself like this, I find I pay a soul-sucking price that I’m no longer willing to keep paying anymore. It’s just too hard.
So next time you see somebody who’s been off sick out walking or biking or merely waiting in line at the store, please resist the urge to reflexively express surprise (to that person or, worse, behind their back) that they’re up and about and acting so “normal”.
In fact, the most helpful thing you could do is to just try saying something like:
“It’s good to see you today!”
.
Q: Have you ever heard something like that “Must be nice . . . ” tone?
Part of this essay was also included in my book, A Woman’s Guide to Living with Heart Disease. (Johns Hopkins University Press). You can ask for it at your local library or favourite bookshop (please support your independent neighbourhood booksellers!) or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 30% off the list price).
See also:
‘Healthy Privilege’ – when you just can’t imagine being sick
30 little things about my invisible illness you may not know
“Smile, Though Your Heart is Aching”: is fake smiling unhealthy?
What (not) to say when you’re visiting the sick
Looking good for your doctor’s appointment: oui ou non?
The new country called Heart Disease
♥
.
Heart Sisters 
I heard this so often at work before my illness, that when my turn at disability came along I dealt solely with HR, effectively “disappearing” from my department. It saddened me, but protected me at a very vulnerable time.
Besides, the few times I had contact with my supervisor or others in my department the only thing I was asked was “when will you be back?” never “how are you doing?”
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What you said was so true. Thanks for the input – it makes me feel better!!
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Carolyn, one of my blog sisters posted this over the weekend, and I shared it yesterday on my FB wall, and as you can see, a bunch of my cancer blog sisters have responded.
You’ve hit a nerve we can relate to very much. I wish the heck it weren’t true that there’s no ‘normal’ anymore, that there’s only a ‘new normal,‘ but that’s reality for most of us in the wake of diagnosis and treatment.
I do feel better each year, but it doesn’t take much stress to toss me under the bus again. And I just can’t bounce back easily anymore. That’s what I hate the most, I think, that this one serious illness just seems to take away one’s ability to bounce — back, forward & sideways — forever.
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Hi Kathi and thanks for taking the time to share your perspective. Your words remind me of this quotation from Anne Morrow Lindbergh that I first used one month after surviving a heart attack, as described in this 2009 post:
“It isn’t the moment you are struck when you need courage, but the long uphill battle back to sanity and faith and security.”
Ain’t that the truth?!
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Great post. In my experience, people are waiting to hear that all is well again. Sometimes I find it far too tiring to go into details, so let it lay however they choose to perceive things.
But for myself, I try to be more understanding toward the illnesses we do not see, and also those moments of recovery that are essential – like normalcy.
A post like yours should be standard reading for workplaces and collaborative environments.
~Catherine
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You have hit upon such an important point, Catherine. When I ask: “How are you doing?” to a person who has been ill, I really do hope she will respond: “Much better!” especially if (in my expert opinion!!!) she looks pretty “normal” despite whatever her diagnosed condition may be (and by the way, the fact that so many women with breast cancer read my blog and really “get” this tells us that this “invisible illness” experience is widely common and not restricted to heart patients, doesn’t it?)
And because I spent my entire adult life (before my cardiac diagnoses) living a blissfully ignorant life of “healthy privilege“, as Beth mentions below, I’m an old hand at misinterpreting others’ externally normal appearance as meaning good health. I’m trying to do better . . . Thanks so much for your support!
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Hi Carolyn,
This is an excellent article that I am sharing all over the place this #MetsMonday.
So important for so many illnesses. It all boils down to that old statement, “appearances can be deceiving”.
Thanks for writing this.
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Thanks Nancy for your kind words and for sharing this far and wide today! Dear readers: #MetsMonday is a Twitter hashtag for Tweets of interest to all those living with metastatic cancer.
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Sharing this with a friend who has Lyme–very relevant!
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Thanks, Curmudgeon!
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This is a great post about an important topic. As you know, I wrote on the topic of “healthy privilege” awhile back, thanks to your and Dr. Becker-Schutte’s discussion of healthy privilege.
I looked great during chemo and radiation for breast cancer. I mean it; I lost no hair and lost weight and looked great. People envied me taking off work for chemo days and coming to work late for radiation days. I mean, I looked great, so I was perceived as taking vacation on those days off. I luckily had had a lot of vacation days stored up and did use them for chemo days.
Lucky, lucky me to have such great vacations!
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“People envied me taking off work for chemo days…” Are you frickety-frackin’ kidding? Is it possible that the people who thought that were unaware of the reasons for your absence? If not, it says a lot about how clueless some people are about the reality of diagnosis/treatment of a catastrophic health crisis.
And who wants THAT kind of “luck”?! Thanks for this, Beth!
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I love this topic!
I have occasionally been greeted by neighbors, former colleagues with: “Aren’t you better yet?!” They don’t want to hear that there is no better for me, just medically stable for the time being. I’ve learned to avoid or ignore some people because they are too judgmental. They apparently live in such fear of ill health, that they attribute all sickness as caused by lifestyle choices. Those lectures I can do without!
My old cardiologist retired and referred me to a new cardiologist, an associate professor at medical school. She wants me to come in for the med students, interns, residents, etc., so they can see a normal looking person with MVD. She thinks the heart attack I had in 2002 could have been avoided if my symptoms had been taken seriously, rather than written off as anxiety, perimenopause, etc. (My actual heart attack was first diagnosed as a dental problem.)
She said even the doctors picture heart patients as being male, having fluid retention, blue lips and nail beds, and circles under their eyes. I look like what I am: a 60 year old, slightly overweight female with dry skin. I just happen to have heart disease.
Slightly off-topic, but the cardiologist has also invited my husband to one of the lectures. She’s removing gender-specific language from my medical history and fully expects the students to flutter around my spouse as the cardiac patient. She’s hoping the surprise will catch their attention and challenge their preconceived notions.
She’s also giving me a nursery school schedule: I get nap time! : )
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Fantastic comments, Just Suze! And I love how your new cardiologist’s mind works (“tricking” those med students into assuming that your hubby is the heart patient!” – tee hee!!!)
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She says she’s convinced with the two of us sitting there, the students will assume he’s the patient and I’m the “dutiful wife.” She thinks a nice trick will help them remember that women get heart disease, too.
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Brilliant . . .
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“You look great” makes me think I’m still doing a good job with the makeup. Sometimes I even say so. What I don’t say to all but the closest friends, is that I can do one thing a day, but not every day. The pasted on smile, with the adrenaline rush of actually seeing people gets me through an activity.
After 15+ years, I still fool myself & do too much, paying for it with days I can barely get out of bed. I like to think I’m an eternal optimist, thinking each time will be different & I’ll be OK.
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Thanks Jennifer for these astute observations. “I can do one thing a day, but not every day” and “the pasted-on smile with the adrenaline rush of seeing people gets me through” is SO true for me, too. It’s often only afterwards when it hits me that – oh, oh! – I’ve done too much.
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For the past few months I’ve had a handicapped parking placard which has been a fantastic thing. Both my conditions are invisible. One being vascular, as when you walk/exert/carry into a store, and it’s hot or cold – I may not start off impaired, but a long trek from the back of the parking lot on a hot day assures I will get them – and need nitro or meds – ditto for cold.
Likewise, my neck and back issues, invisible as they are, don’t show the nerve pain and impairment from that neck and back. Avoiding long walks carrying things and getting the cart helps greatly. I may spring out of the car, but I can barely carry my purse. I often feel badly when people see me looking “great” going about my daily business, but one doesn’t always need a wheelchair – but accommodation – to be functional.
Thank you for visiting this topic!
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So nice to hear from you again, Mary! I remember our visit together with SwissDots in Palo Alto very fondly. Handicapped parking spots are tricky, aren’t they? We don’t bat an eye if we see a person with obvious mobility issues parking there, but we’ve heard horror stories about some people being publicly harangued by strangers if they don’t appear to “deserve” that parking placard. Thanks for this reminder that all kinds of limiting physical issues could benefit from special parking accommodation.
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I understand this post well. Having suffered chronic pain for more than 20 years, I continued to work as a nurse most of that time. No one knew the pain I was feeling or how I coped only with pain medication. People just didn’t realise as I put up a front. It became harder and harder.
After my heart attack though, I felt horrible and as I still couldn’t get my head around it, my body certainly told me I had been through a major event. I am so practised at putting on a happy face, people find it hard to accept that to this day my life is ruled by pain.
Outings for me are a major event and I have to psyche myself up for it. Sometimes I end up not going on the outing.
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Hi Denise and thanks for sharing your story here. It seems that keeping up a brave front no matter what can become just a way of life. My Dad used to tell us this little poem:
Don’t tell your friends about your indigestion
“How are you?” is a greeting, not a question!
But we can actually pay a big price for putting on that happy face despite debilitating pain – psychologists call it “emotional labour“, defined as “the suppression of feelings to provide a welcoming outward appearance”.
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I learned to do a quick translations in my mind. When I hear ‘you look wonderful!’ I flip that into ‘It’s so nice to bump into you’ and reply ‘why thank you!’
Because I realize most greetings are social conventions and well-meaning. And at 59, I now look as awful as I feel and have dropped many notches in ease of daily life the past year. I’m rarely even out of the house. There is no way to help healthy people understand that taking a shower for us is forever going to require ‘heroic effort’. And that we now have to make deeply anguishing choices….. Do we expend precious energy on a shower or do we force ourselves up to create a meal, start some loads of laundry, spend valuable time on-line?
These are no longer spontaneous activities. They now require gut wrenching priorities that may mean the shower gets put off for days. Humiliating and stressful. Isolating.
Found a mental tweak reminder that works for me: Monitor your tendency to attach emotions to what are really only steps that need to be taken. Tasks are done step by step. This has the immediate effect of calming me down, taking some deep breaths and further stablizing my anxiety by writing out a list of the steps, one by one, no matter how small.
If I’m able to cross off a few steps or all of them, I feel and see there has been progress w waste of less emotional energy.
Thanks for this rarely understood phenonema explanation Carolyn. Lots of folks feel at a loss as to what to say to us. Maybe this will help! You always do.
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Thank you for this, Jaynie! I love your reminder to us all that “most greetings are social conventions and well-meaning”. And if they’re not well-meaning, they’re not the sort of people we want to be with anyway. Thanks also for the tip on breaking down those tasks – such good advice.
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To a casual observer, I look pretty good, so I know that tone all too well.
A very long-term cancer survivor, I have many conditions and complications from treatment, as well as several genetic conditions, including cardiac. I worked for many many years and people who know the full extent of my medical history wonder that I managed for so long. I still do whatever I can to stay active, to bring some joy to life, even when I’m in pain, and thus far have managed to avert depression.
But from time to time acquaintances wonder aloud that I seem to have no interest in returning to work. I am absolutely flabbergasted whenever this happens. It was with extraordinary effort that I managed to work as long as I did. Now it takes all I can do to preserve my health (such as it is) and to maintain some quality of life.
If a few people actually say something TO me, it’s likely that still more people say things ABOUT me. In fact, I happen to know that is true. And while I find their judgmental stance outrageous, it does me absolutely no good to dwell on it.
I have learned that certain people and situations usually are more of a strain than they are worth, and so I simply avoid them whenever I can.
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So interesting, Kathleen. Because you “look pretty good”, others naturally wonder why you have no interest in returning to work! Similarly, a man I met recently asked why I’m “retired” (translation: “Why aren’t you working?”) I tried to explain to him about coronary microvascular disease, debilitating symptoms, blahblahblah but I could tell by the look on his face that he wasn’t getting it and never will. So why bother?
His response was: “So this is REAL, then?” End of discussion.
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When I think back on how terribly hard it was for me to keep going for so long… until it was no longer an option.
“So this is REAL, then?” As though we are sloths who use our energies solely to construct elaborate fictions.
On a recent road trip with my mother and aunt in Quebec, I met a few cousins who actually retired in their 50s, and it was nice to simply say, “Oh, me too.”
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This reminds me of the time I needed to reduce the number of my piano students due to the frequent interruptions due to a trip to the hospital and a couple of new stents every couple of months.
It was difficult for the parents to understand how this perfectly fine looking person had to reduce such a sedentary activity.
After all, it wasn’t exercise. Of course, they couldn’t see the depression I was falling into and the time it now took to accomplish the smallest task, including keeping the times of the lessons straight. More than once, my doorbell would ring and I would be unpleasantly surprised by a student standing there because I didn’t have him/her penciled in.
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Hi Pauline. You bring up such an important point. Not being able to manage details that we used to be able to do in our sleep can be both distressing and debilitating – and all of that can serve to make us feel even worse than we already do. The parents of your students just see you sitting there on the piano bench – and, really, how hard can that be, right? 😉 So much goes into that lesson that they simply cannot see or comprehend unless they have walked a mile in your hospital booties.
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FIRST I want to say I absolutely think this is a really important post . . . for friends/family and colleagues who probably won’t be reading it.
I sprained my ankle a few years ago and had to wear a “boot”. I got so many people empathizing I decided whenever I needed some TLC I’d wear my “boot”. (It’s in my closet).
However, that was an “aha” for me. I realized I like it when people know how miserable/sick/hurt/exhausted etc. I am. I also realized that every time I got annoyed (read: hurt/angry/resentful) when someone made a comment like “… how good you look . . .” etc I was harming myself even more.
Now I TRY to remember to REBOOT and say “How nice of you to notice!” and smile inwardly that I’m doing a damn good job of being “normal”. Doesn’t always work but it’s gotten easier.
I still have the “boot” in my closet . . . just in case!
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Hello Judy-Judith and thanks for sharing your “aha” perspective. I wore a leg cast for four months after a cycling accident years ago, and I can confirm that climbing onboard the bus sporting crutches and a purple cast will clear the front of the bus in no time flat as fellow passengers leap up to offer their seats – even though I had virtually no pain or even discomfort. But it wasn’t so much that I “liked” the TLC offered at the time (in fact I often felt embarrassed by all the fuss I was causing) as much as the reality that I really needed to sit. I simply could not have managed balancing my crutches, briefcase, purse, and one good leg while standing and hanging onto the ceiling strap during my commute to/from work. Luckily, obvious signs like crutches/cast make needs visible.
The difference I was talking about in this post, of course, is that ongoing cardiac issues often make me feel far worse than I ever did with that broken bone, yet ironically that purple cast and crutches is what got me a seat on the bus. Invisible illness simply doesn’t get attention – unless it’s that misunderstanding embued in the “tone” of those “But You Don’t Look Sick” implications.
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Carolyn, I totally understand what you were talking about in this post as I would trade the acute pain over my chronic pain/exhaustion.
Your post just made me reflect on how I had so begun to identify with my chronic conditions I was (and still am sometimes) wanting others to “understand” and feeling very alone in my pain.
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Boy, can I ever relate to this blog entry! I have experienced serious chronic persistent pain for 25 years. I have heard it all. Even from a rehab counsellor who said “I have a hard time believing that you have pain because you are so positive and have such a great smile.” What? !!! Or, ‘It must be nice to be paid to stay home.’ Again. What? !!
Three years ago, I was diagnosed with a heart condition. Silent for years, it finally started to create some very strange symptoms. When anyone, including doctors, and yes, it happens all the time, tell me that ‘You look great!’, I laugh and respond with ‘Yes, I do, however HOW I look is not an indication of HOW I feel, but rather an indication of great makeup application and a positive attitude!” There is an awkward chuckle and then an up-and-down motion of their head. Just thinking about their reaction makes me giggle.
It took me a long time to not feel like I had to ‘prove’ someone’s subjective opinion of HOW I FELT. Those closest to me only need to look into my eyes, and they can see how I am feeling. They have said as much.
Thanks, Carolyn. I love your blog!
Janet
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Hello Janet – lovely to hear from you. I really like your standard response to “You look great!” I wrote about that smile effect here. I blame three decades working in public relations for my own tendency to slap on a smile no matter how I may actually be feeling. You’re so right, nobody should ever feel like we have to prove or disprove subjective opinions about our condition, despite how relentless such opinions (unspoken or otherwise!) can be.
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This is what I have been feeling for three years since my heart attack.
No one seems to get it. I just want to yell “Shut up, you have no idea how I feel” the next time someone says, “You look great”.
Guess what, I don’t look great and I don’t feel great. I just want to have some energy again. I’m not quite sure what rehab was supposed to do for me but I can tell you I have been thru it four times and left each time feeling like a wet noodle and wonder how I drove home and how many stop signs I went thru. I would pull in the drive and sit there too tired to pull myself out of the car.
I have tried to keep up with my life as I knew it before the heart attack but it just isn’t working.
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Sandy, I hear ya! What I learned (from my pain specialist at our Regional Pain Clinic) seems so simple and basic now that I think about it. I was telling him how, despite my best efforts at trying to walk 10,000 steps a day (that’s what I’d been doing before my heart attack and what I decided would help regain my heart health), I was finding that a walk would utterly wipe out my entire day. I could walk nowhere near 10,000 steps and always felt like I’d been hit by a bus after each walk. He said: “Whoah! Start from zero and work your way up!” So I started small: one block per day the first week, two blocks the second week and so on. It took a long long time, but the first thing I had to do was to stop beating myself up for not being as fit and active as I’d been before. Best of luck to you…
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I always feel uncomfortable when I stay seated on the bus, when someone standing in front of me looks worse off than I do. I have to remind myself, there’s a strong likelihood I will fall down if I stand up in a moving bus.
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I’d like to think that you’re not the only person sitting on that bus able to offer a seat to somebody standing who looks like they’d need a seat! But, ironically, I suspect those of us with ongoing health issues are most aware of the health issues of others.
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This is the very reason I find myself staying home from church. I haven’t yet returned to work, and in the meantime “You look great” is too much for right now. I’ve said it to other friends with invisible illnesses. I shall cease.
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Hi Beth – avoiding certain social settings is surprisingly common, exactly as you describe! I suspect it’s one reason I prefer very early mornings for my long walks. I feel that I need to do these long daily walks for the sake of my poor damaged heart, yet I’m aware of how the sight of me out striding along the ocean may make others judge the overall state of my health. I hope you’ll consider putting your thoughts into words to complete the “30 Things About My Invisible Illness You May Not Know“ exercise next month for Invisible Illness Awareness Week.
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Thanks once again dear Carolyn. I have suffered with fibromyalgia for decades which is invisible and now heart disease which is also invisible!
For one month this summer I had extreme vertigo, another invisible condition! Fortunately I found a vestibular physiotherapist who got rid of those tiny crystals in my inner ear and now I am vertigo free, but it seemed to me that all I was doing was lamenting mainly to myself about ailments that no one could see.
Recently I went to a friend’s birthday party and a woman there had a cast for a broken arm. She was catered to by everyone. I sat beside her, dizzy, with a fibromyalgia flare-up, wonky hip and of course the lack of energy from all conditions including heart disease. I kept smiling but what I really wanted was someone to fuss over me. I was too tired to stand around. Then of course came the guilt from feeling like a selfish wimp, because I could at least use both my arms and I wasn’t in a cast.
I came home and had to lie down filled with self pity. What we women do to ourselves, always putting on a happy face! I could not even read your blogs most of the summer because of vertigo, but I certainly am happy I am back on your site!
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Oh, Barbara! I’m so glad that your vertigo episode has been addressed. That was one condition too many on an already too-full list. The description of your birthday party experience is a good example of how isolating chronic and debilitating health issues can become – no wonder it can so often seem preferable to just stay home when we ponder what’s worse: missing an event, or going to the event but suffering. Happy to have you back here.
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