On a recent episode of Curb Your Enthusiasm, Larry is playing poker with his buddies and announces that he might have cancer.  One by one, each of his so-called friends announce that they couldn’t be friends with him if the diagnosis comes back positive.  Ouch!  Unlike many of the ridiculous cringe-worthy situations on the show, the poker scene is still cringe-worthy but unfortunately not that ridiculous.  This extreme negative reaction to someone’s chronic illness is quite common in the real world even if friends are not going to be as upfront about it as Richard Lewis and the other guys.

The reasons some friends bug out I think mainly boil down to these:

People’s fears of getting sick and their inability to come to grips with their own mortality

The simple fact that many people’s favorite topic of conversation is themselves and these self-absorbed people may assume that someone who’s ill will only want to talk about her own travails rather than listen to them.  The thinking is: “I’ll move on to a more receptive audience.”

Awkwardness: not knowing what to say to the ill person.  The website PsychCentral makes the interesting point that while our society has rituals for when people die there are no set rituals for how to interact with people who are chronically ill.  We get how to do weddings, funerals, Bar Mitzvah’s, etc.  And we’re pros at exchanging everyday pleasantries.  But as far as continuous interaction over the long haul with someone’s who’s sick, most of us are clueless.

The sick person’s not being asked to join activities due to the assumption that they lack the energy to participate

Friends who are disappointed by the limits a person who looks perfectly well puts on activities in order to conserve precious “spoons”. Invisible illnesses are a hard thing for people to wrap their brains around since our society teaches us that sickness is usually very visible.

And yet

Chronically ill patients often do find some friends and family members (although they may only be able to count them on one hand) who are there through thick and thin.  Boy, wouldn’t it be great if we could clone these people so patients wouldn’t feel that they’re depending too much on a select group of friends and family?  Unfortunately, I don’t think science is there yet.  So what’s a chronically ill person to do?

First, treasure those remarkable people who are there to listen and support. You may be surprised by who they are.  Based on my and wife’s experiences dealing with challenging situations, sometimes the friends you most expect to help go AWOL and those you consider acquaintances step up and are awesome.  Maybe being more open about your condition can yield some pleasant surprises (although I acknowledge that there’s a competing strong impetus for chronically ill patients to present a brave front to the world).  On last week’s episode of the admittedly sappy show God Friended Me, Ally reluctantly tells a woman she just met about her breast cancer, assuming that this would cause their incipient friendship to vanish.  She was pleasantly surprised when the woman asked her out on a date.  Alright, it’s a fictional TV show but I gotta believe these things happen in the real world.

I think the friends who go AWOL can be divided into two groups.  (The marketing researcher in me just has to segment everybody😊) There are those, like Larry’s poker playing “friends”, who are lost causes.  However, I think there’s another group who want to be there for their ill friends but who don’t know what to say or do; so, they avoid the awkward by disappearing.  Here’s a bold idea and as always, it’s easier to give advice than to follow it (i.e., my way of saying I don’t know if I’d have the courage to do this).  One way to suss out the confused from the self-centered is for the ill person to send out a mass communication to friends that acknowledges their fears and concerns and tells them what the ill person specifically needs from her network such as the items on this list written by an ulcerative colitis sufferer.  Then let the chips fall where they may.

And what about making new friends?  Despite all the bad press Facebook’s has gotten, it’s been a godsend for many chronic disease sufferers with groups galore where patients can vent, commiserate, and give advice to each other.  In addition, massive online patient communities like Inspire, The Mighty, and PatientsLikeMe, have groups for many, many conditions, which is especially helpful for those with rare diseases where the nearest fellow sufferer might be in the next county.

No easy answers

I worry that this post oversimplifies an extremely complex and difficult situation that’s not so easily resolved with a few pat answers.  The chronically ill are not going to magically change the minds of friends and family (nor should they have to) who can’t deal with their illness nor care to.  However, the hope is they can educate those friends and family, even if it’s a handful of people, who want to help but don’t know how.  Easier said than done. For all those chronically ill patients who feel abandoned by friends and family, sending love and warm wishes for success in recovering some of the connections that have been lost and making new ones.