Crossing the Border from the Land of Health to the Land of Ick



DSC08370 I've lived most of my adult life dealing with illness in some form or other. Since college, I have no memory of what being "healthy" is like without worrying about, or living through, the next relapse. My experience of traversing from the country of Health to the Land of the Ick is not the same as others'. A few years ago, when a friend told me she was suddenly found to have breast cancer, I broke down and wept. Terribly embarrassed, I apologized all over the place. My friend was cool and calm, and thanked me for my response. Why would she thank me for being a cry baby?

She said people who are healthy had no idea how her reality just made a fundamental shift from being Well to Having Cancer. They were very busy trying to convince her that nothing had changed. She will beat this thing that had intruded itself and go on as usual. They didn't understand that life would never be the same no matter what the outcome. She appreciated that I did understand and I was grieving for the loss of her identity as a "healthy" person.

My wise friend (who is in remission now and counseling cancer patients at a big cancer center) was being gracious. Yes, I was crying for her, a new traveller in this strange place, but the truth is, I was crying for myself, too, who had already been there for a while.

I read a blog post recently The New Country Called Heart Disease, that reminded me of this conversation.

Carolyn Thomas is a heart attack survivor. She writes this wonderful blog, Heart Sisters, "all about women and heart disease – our #1 killer – from the unique perspective of a Mayo Clinic-trained heart attack survivor and patient advocate from Canada."

While she writes mostly for people dealing with heart disease, much of the advice and information she provides is generalizable to coping with any chronic disease.

Another article you may identify with:

Your Health Care decision: Don't Worry Your Pretty Little Head About It

And Heart Sisters provided this helpful 20-minute video from the Foundation for Informed Medical Decision Making, from both the patient's and the doctor's point of view. It is a long video so grab a cup of tea or coffee before viewing.

2 comments


  • Hi Dr. A – thanks for the great plug for HEART SISTERS.
    I think your friend who was diagnosed with breast cancer was 100% correct in her observation: “…people who are healthy had no idea how her reality just made a fundamental shift from being Well to Having Cancer. They were very busy trying to convince her that nothing had changed.” No wonder she was so grateful for your completely open and empathetic response to her as a “new traveller in this strange place”.
    I think that’s why, unless they too have ever been diagnosed with a chronic illness, those who love us try to ‘cheer us up’ by these pep talks and telling us how great we look. It can be distressing for others to see us in any other way than how they’re used to seeing us. They NEED us to get back to “normal” even as we are facing the “new normal” we’re in now.
    I watched a dear friend of 30+ years die of metastatic colon cancer a few years ago; the last five years of her life had been an endless whirlwind of aggressive surgery, chemo, and radiation. Through all of it, I was her biggest cheerleader and spent those last years urging her to keep fighting, stay strong, don’t give up, look for the silver lining, don’t let any negative thoughts intrude, rah! rah! rah!
    It was only in the last few months of her life that it really hit me what she had been going through, one loss after another after another as her debilitating disease “reasserted itself” as we say in palliative care, yet somehow not feeling allowed to express to any of us how afraid or angry or exhausted she was.
    One day I burst into tears at her bedside and sobbed as if I’d never be able to stop weeping. All I could say to her was “I’m so sorry that all of this is happening to you!” – which I now realize is something I could have said years earlier. It was a clear turning point in our long relationship.
    Thank you again,
    cheers,
    C.

    2010/10/15
  • Carolyn, I find it hard to find the words to thank you for your note. Thank you for your acknowledgment of my little post, thank you for sharing such an intimate and significant moment and thank you for the important work you do with Heart Sisters. We can all relate to it.
    Be well!
    Elvira

    2010/10/17

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