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Tuesday, August 13, 2019

In Other Words: Awkward Exchanges Reveal What Scares Us




We don’t know how to talk about disease. Our culture is so focused on youth, health, and vitality that the only time we address disease seems to be during the commercials on the evening news.  And even then, those are some pretty healthy looking sick people.

As you know, I’ve been dealing with Diffused Large B Cell Lymphoma for a couple of years now and I underwent the new CAR-T treatment with great success. The doctor told me last week that the cancer is gone. None of this is a secret.  I’ve been open about the illness and the experiences because we need to learn from each other. I have tried to be positive but there are some dark parts of this journey that I need to acknowledge and share so we don’t embarrass ourselves or unintentionally insult someone. So what do you say to someone who has a disease?


Some of the exchanges I’ve had are awkward or uncomfortable and some are simply baffling. People, for the most part, mean well, but they don’t realize how insensitive their comments or questions come across. They struggle to find the right words as they try to make some sort of personal connection.

Having said that, there are some things people say, probably without thinking and maybe because we don’t really know how to address disease, that just make me scratch my head in wonder.

Cole Imperi is a Thanatologist who lives in Northern Kentucky. She’s a death expert and one of the most fascinating people I have ever met (http://americanthanatologist.com).  She told me that, “Humans are not good at dealing with difficult emotions.” True. And all of those emotions are rooted in loss. She says of disease that, “It’s how our brains perceive the loss. Our brains grieve the same way when we go through a divorce or if a friend ghosts us or your mom dies.” 

We lose something of ourselves with disease, death, divorce, or failure.

That leads me to my observations. Here are just a few, but each one reveals a concern or even a fear. But don’t worry, I’ll end on an upbeat note.



Did you lose all of your hair? 
“You know, my uncle died of cancer.” It has been bad enough dealing with my own disease so please don’t try to relate to me by telling me your cancer stories of people who suffered or died. That’s not comforting. I know you’re trying to make a personal connection, but we don’t have to connect on the disease level in order to be friendly. These interactions usually turn into a game of one-upmanship and the stories tend to get progressively more graphic. This doesn’t make anyone feel good in the long run.

Don’t ever ask about money or insurance. Ever. If the patient wants you to know then they will tell you.

“You know, there’s a reason for everything.” Okay, let’s get this straight. There are causes and effects. That’s science.  Reason assumes that an intellect is involved. So what kind of cruel intellect would inflict disease or disaster on anyone? There is not a reason for disease but there is a cause for disease. When you say this, you are implying that the patient is being punished. Developing a disease is not a reasoned punishment.

“ Everything’s going to work out.”  This generally reveals a positive and hopeful attitude of the speaker but really how do you know? No one outside of the medical field can predict an outcome  with any certainty. Science and statistics may disagree with hopeful intentions. As much as I want to will something to happen, the science may not be able to comply.

Someone once said, “You know, they have a cure; they just don’t want to reveal it.” The ignorance of this one just rankles me to no end. I usually peer over my reading glasses and give that you-didn’t-do-your-homework-again look when I hear this one. If this is something that you believe then I invite you to stand in a cancer treatment waiting room and explain this asinine thought to cancer patients, researchers, nurses, and doctors. This is just callous and cruel and a lie.

But here is the worst - the people who do not communicate at all. Cole Imperi claims that, “It’s easy to be scared of something that has no name” or you don't understand. They do not return texts, calls, emails, or any correspondence. They do not reach out to check on you. They ghost you. Why?

Imperi says, “People tend to build an emotional wall to protect themselves from something that is difficult and inevitable. But as they do that, they negatively affect relationships…. We don’t know what to say because we don’t know why things happen. People are busy with ‘Why did this happen?’ instead of asking ‘What can I do to help?’ It’s a cultural problem….Many people live their entire lives on what they can avoid.” Face that fear and grow from it. Don’t ever be afraid to reach out to a friend who is suffering - unless you don’t want to be friends anymore. And that’s not comforting.

There are, though, a couple of things you can say and do.

“Thoughts and prayers.” It took me a while to come around on this one, but this is often an honest sentiment when not expressed by a politician. By and large, most of us lack the specialized skills to heal, so we use a phrase to express our concern.  It admits that they are helpless but it also emotes care. There are two types of medicine: the type that science injects into my body and the type that friends inject into my heart. Both are good. I am on the prayer lists of multiple churches and I so appreciate that support. So if you say this, be sincere and you will be warmly received.

“I’m sorry.” This is a simple, sincere, and an honest expression. After you say this then listen. Just be present for your friend.

Don’t say “Just call anytime. I’m available.” Instead just do it. Take charge. A friend called and said he would cut the yard. Another called to take care some rural property. And other took on the Herculean task of organizing rides and sitters since I could not be left alone for long for fear of a seizure or other life threatening event. Others dropped off books or stopped by to chat. Others sent cards of encouragement. A large number volunteered to drive me to the hospital for treatments. I love these people dearly. They did not ask. They saw the need and filled it. They acted and I love them all for that.

All of this is a roundabout way to get to my point. Let me tell you what local legend Linda Slone told me. I was being stubborn about something in one of our discussions and she wagged her finger at me and said something to the effect that, “If someone offers to do something for you then let them. It’s their way of showing how they love you.”

She’s right. Letting go of that stubbornness and desire to be independent was liberating and quite lovely. And it’s welcomed. Let love in. Let the healing begin. That's a nice approach.

Disease happens. Death happens. Suffering happens. We can't avoid it and ignoring it is just as bad.

3 comments:

  1. Thank you. My friend was just told this morning to sing a DNR and go home with hospice. This is very helpful.

    ReplyDelete
  2. Congrats on the success of your treatment and the remission of the cancer!

    Continued thoughts and prayers!

    ReplyDelete