“Wow!  You look just fine!  You look exactly the same!”

That’s a fairly typical greeting from those who have not seen me since before my heart attack. While they might assume that this is a thoughtful and flattering comment to offer, many times it may not feel that way.

Surprised? Many women, especially in the early days, weeks and months while still reeling emotionally and physically from their life-altering cardiac train wreck, tell me that they often feel like replying to such greetings with:

“I am NOT fine – and I am NOT the same!”

Instead of  the well-meant but oddly niggling ”You look great!” – what might be more helpful to the freshly diagnosed heart patient?  

First, the urge to say something comforting and encouraging to somebody with heart disease or any other chronic and progressive illness seems like a natural, kind-hearted gesture.  But my fellow heart sisters tell me that they suspect this comment more often reflects the relieved feelings of the speaker rather than the actual fabulousness of our appearance.  Friends feel apprehensive that we might look very ill and very different, and that this dreadful appearance might make them feel awkward or uncomfortable just being around us.  What will they say? How will they react if we look or sound really bad?

There is a similar reaction in end-of-life care: bereaved people are often told by well-meaning friends and relatives, in particularly chirpy tones, how great they look – this after the death of somebody they love. It can be hard to know just how to respond to such an irrelevant assessment of your appearance when you are grieving.  Most simply try to be gracious, to smile gamely, and to say: “Thank you!”

Similarly, when others see me now, walking/talking/smiling/laughing – appearing like my old self – no wonder they may gush in a tremendous flood of relief:

“Wow!  You look just fine!  You look exactly the same!”

What gushers may not appreciate is how long it has likely taken me to look ‘the same’, how much effort and exhaustion this has meant, what I’ve gone through just to run a comb through my hair or brush my teeth (and don’t get me started on taking a shower!) or to keep smiling this pasted-on little happy face in order to keep up my pleasant facade of normalcy.

Because that, above all else, is what heart patients long for: to feel normal again.

Other things to avoid saying when visiting:

• don’t start in on that endless story of your Uncle Stan and his much more interesting heart attack – heart patients simply don’t care about other people’s medical histories at this moment

• don’t try and push any life-saving miracle cures, products or supplements on us, particularly if you are selling them (this is unforgiveably tacky)

• don’t try to cheer us up if we’re having a bad day – we’re entitled to have a bad day once in a while because we’ve just had a heart attack, for Pete’s sake – and if we do confess that we are having a bad day, do not under any circumstances say: “Well, at least YOU LOOK GOOD!”  - unless you want a small metal canister of nitroglycerin hurled at your head

Next time you approach a heart patient, a bereaved person grieving a loss, or those diagnosed with a chronic, progressive disease – what could you do or say instead of gushing over their appearance? One of the most helpful comments to me so far has been some variation of  the simple statement:

“It’s wonderful to see you again!”

which is probably fairly accurate,  feels pretty darned good to hear, and doesn’t elicit the “If you only knew…” reply that we’re silently muttering.

Remember too that gifts of service or time are always a good idea.  When I was newly home from hospital after my heart attack, I loved people who phoned and said: ‘I’m at the grocery store – what can I pick up for you here?’  One friend came over and planted all my summer annuals for me because she knew I was not able to do that; another called to say he was coming over to wash my car – inside and out!  Bring a heart-smart casserole, homemade soup or a big fresh salad when you drop over. Keep your visits brief – just making conversation, even with people we love, can be exhausting for us, especially at the beginning of recovery.

Does Christine look sick?

For an enlightening perspective on living with a chronic illness, visit the But You Don’t Look Sick? website to read Christine Miserandino’s powerful personal essay called ‘The Spoon Theory‘.  She uses a handful of restaurant teaspoons to illustrate to a friend her limited reserves of energy (spoons) that must be carefully planned and counted out to get her through an average day.  Her unique Spoon Theory helps to explain what is very difficult for the healthy to understand:  how utterly exhausting it can be to get through the simplest of tasks when she’s having a bad day. In Miserandino’s case, her chronic diagnosis is Lupus, but she could well be speaking for heart patients, too.  She’s a national board member of  The Lupus Alliance of America, and claims that her passion now is helping those with Lupus through her writing, speaking, volunteering, and work as a patient advocate.

Though battling a shopping list of debilitating symptoms since the age of 15, Christine has consistently been told, by both well-wishers and doctors alike: “But you don’t look sick!?” as if that were some kind of compensation for being chronically ill. Many times, not looking sickly makes it harder to validate an illness nobody else can see.

© Carolyn Thomas  www.myheartsisters.org  2009

See also:

• “But You Don’t Look Sick…“
• Why You Should Not Ask: “How Are You Feeling Today?”
• Ten Helpful Things To Say To A Sick Friend

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