Carnival of blog posts about patient experiences with renewal is up at Diabetes Mine

Diabetes Mine hosted this month's collection of Patients For A Moment (PFAM) blog posts.  The theme was renewal.  They are a great collection and worth reading.

Does Illness Breaks Down Communication Walls?

Here is a story from an article in NY Magazine by Meaghan Winter that is largely about how weight can change relationships.  But the final vignette in the series is really about how illness breaks through the trivial and can accelerate the deeper conversations that couples who aren't living will illness may take decades to get to.

I think those of us who do live with illness as part of our relationships have known what it's like to be too exhausted or consumed to be able to squander communication energy on the easy (and delightful) irrelevancies like taking out the garbage and refilling the ice cube trays.  We have to quickly get to talking about how we are feeling (both the well and ill partner), what matters to us in the moment, what we feel capable of doing, and what are hopes and fears are.

Here is the story:

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Soon after Kyle and Alison became fast friends, he began losing weight and suffering flu-like symptoms. They started dating in their late twenties. One month later, Kyle, already “damn near gaunt,” was diagnosed with cancer.

Even as Kyle underwent chemotherapy, he kept working as a social media strategist and “tried very hard to project independence.” He had only recently moved out of his parents’ home and “didn’t want family doting.” Alison’s care allowed him his adulthood: “I tried to help him keep things as normal as possible,” she says.

Chemo so weakened Kyle that even picking a movie wore him out. Alison made their plans, and they often “restricted their radius to the neighborhood” because he was tired. Despite his illness, she didn’t consider leaving the burgeoning relationship. “I just wanted to hang out with him,” she says. Because Kyle’s illness immediately plunged them into “intensity,” “once in a while” she’d wonder, “Who’s he going to be in the future, my friend, my boyfriend, fiancé?”

Now that Kyle is cancer-free and they’re living together, they’re learning later than usual to negotiate “little New York couple things you take for granted,” like going out separately. Alison says that they “broke down the walls under a vastly different peril” means they can “broach uncomfortable topics” like how they’re feeling about themselves “without fear.” He adds, “It doesn’t mean it’s not awkward sometimes … But it never feels judgmental.”

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Do you have your own story about illness and communication.  I'd like to hear it.

My New Years Resolution: To Complain More

Complaining has a bad rap.  It's often considered a first degree relation to whining, which dictionary.com defines as: to snivel or complain in a peevish, self-pitying way.  That's four derogative descriptors in one definition.

The definition given to complain includes: expressing dissatisfaction, pain, censure resentment; to find fault.  Slightly more benign, but still pretty unflattering.

What if instead of complain, we used the term share, or repair, or even renew.  

When you have a chronic illness you can spend a lot of time and energy handling your care regimen, your exhaustion, and your pain.  On top of that, you need to manage your roster of daily responsibilities and chores, and also produce the emotional steam needed to stay just six inches ahead of your illness so you can function with dignity and benevolence.

Sometimes complaining serves as the necessary release valve so you don't combust.  One or two gripes expressed out loud can help you renew flagging energy.  Energy that had served to contain distress can be released and redirected toward fortitude.

I have found that saying, "I can't stand this pain another minute," helps me to stand it for a lot longer.  And after I say that, if Richard, my partner, holds my hand and says, "I know," we can both stand it together.

Sometimes complaining is connecting.

When someone asks you, "How are you?" instead of answering with the expected, perfunctory, "OK," sometimes saying, "Not so good today," or "I'm actually having a bad day," is honesty.  You're not deflecting the asker with a token response.  And if you then follow up your answer with, "I really appreciate your asking," you have made a genuine connection that will hopefully have more meaning for both parties.  

I'm not suggesting you do this with your Starbucks barista or Olive Garden waitperson.  But why not with your friend, colleague, or cousin.  And certainly with your partner.

In fact trying to keep your state a secret from your partner by not complaining is misplaced kindness.  It cheats both of you of a chance to connect -- the ill partner doesn't get empathy and the well partner doesn't get a chance to show understanding.  And besides, it doesn't work.  

When you don't complain and try to hide your real state from your partner, you fail.  Something leaks out that your partner picks up on.  If you don't share it directly (share being the new term for complain), misconceptions and misinterpretations result.  Your partner may think he did something wrong or that you're worse off than you actually are or that you're just being cranky.

So let's reframe complain.  Complain is share and repair and renew.  It may still be peevish to whine, but it's authentic to complain.