Those of us who spend much of our time embroiled in some way within the healthcare system are reminded, over and over again, that not everyone sees themselves as a patient in the same way.
As in: you say “tomato” and I say “tomahto.”
I was reminded of this after reading this article from New York Magazine (BTW – not to be confused with the New York Times or other publications with “New York” in them.) The article is entitled, Here’s What Not to Say to Someone with Cancer.
In the article, author Deanna Pai relates her story of suffering through her cancer diagnosis and treatment, concluding that she truly detests the whole concept of “battling” cancer, or fighting it, or “winning” that battle – all of the various ways of drawing parallels between war and sickness. She further hated the advice from friends and family to “stay strong.”
Does that mean those well-wishers were wrong to say those things to her? No. Not exactly.
Does that mean that such a parallel between strength, and war, and fighting are wrong? No. Not exactly.
It simply reminds us that we are all different. We all see our health-challenge worlds in very different ways. That when we are sick, tired, and debilitated, we hear and process words quite differently – differently from the way we would hear them in our healthy lives, and differently from each other.
Accepting we are all different, then, for Deanna, her loved ones and closest friends should have attempted to become aware of her feelings on the subject. Hopefully that’s what they did – altered their conversations with her to respect her need to avoid those war and fighting metaphors.
In 2004, I was diagnosed with cancer. I’ve been there, and suffered the emotions, including the obvious fear that goes along with such a diagnosis. I’m sure people made all kinds of supportive comments to me about my diagnosis. I don’t remember (that was a long time ago!) – but if I don’t remember, then that probably means is that whatever they said to me didn’t bother me much either.
The truth is, my “war” was not with cancer; rather it was with the healthcare system itself. It was the system I had to battle – the labs, the providers, the billing – all those aspects of the system that diagnosed me, then tried to treat me for something I didn’t even have.
I suspect that in many ways, if you or a loved one is dealing with cancer, you may feel still differently about how others refer to your diagnosis and treatment. Because, at the bottom line, as stated earlier – we are all different, as are our preferences.
So what does this mean to you going forward? Why should you care, whether or not you agree, with Deanna’s point?
Part of dealing with illness is to reduce your stress. To the extent people are talking to you in a disagreeable way, please don’t just accept it – because that’s causing you stress.
Instead, say something. You don’t need to be confrontational nor disagreeable. Keep it simple, and be a bit self-effacing, and not only will people accept your request, but they will appreciate that you spoke up.
Please don’t refer to my cancer as a war. I’m not that strong. I’m just seeing it through.
Please don’t try to give me advice from your experience. I appreciate that you’ve been through this, but we all take our own paths.
Two final pieces of advice, for those of you who know someone else who is dealing with cancer, or any other difficult disease:
- Say something – or put another way – don’t just say nothing. The patient (perhaps you) will appreciate that you’ve acknowledged their journey and circumstance, even if they don’t want to continue a discussion. And
- Be hopeful, unless they cut off that line of discussion. Most of us do want to maintain our hope, even if the face of difficult treatment and uncertain outcomes. If they prefer you not discuss hope, then let them tell you.
Have you experienced this hurdle of not knowing the right thing to say, or not knowing how to receive words from someone else? Please tell us your story.
Your Responsibilities as a Patient (Maintaining Your Rights)