The Stigma of Illness
A friend and I have been talking about the loss of our cachet. We both have Empty Nose Syndrome. We have noticed that people give us a wider berth these days. They know without us even saying anything: We’re damaged goods.
It’s even worse if we talk about it—this would be me to whom I am referring, not my friend. My friend is a generation younger than me, and she seems to have the instinct to be embarrassed about being sick.
I am baffled by the taboo of illness and talking about illness. It is a part of the human condition. Along with other forms of suffering, it is the difficult part. It seems to me we need the company of others most to help us through rough waters. While the current prevailing “wisdom” is that the purpose of company is for having fun. These days, people think that suffering should be conducted discreetly, out of the presence of healthy folk.
Pussy-footing around friends, I try to ascertain if I can talk about my illness. There are only a few to whom I can talk and it is not enough. I have been surprised by the lack of interest in most to whom I have confided. Their collective response has been something along the lines of, “Oh really? Well huh.”
I was recently gifted with insight into this attitude of disinterest when contacting an old friend. I had inquired about another old friend. The response went something like this: “Yeah, I heard all about her health problems, over the years, with a few other problems thrown in besides.” It was obvious that this former friend’s health problems had made her a loser in the eyes of the one who had heard about them. More so, I would suggest, because she had talked about them.
This is mysterious business to me. Frankly, creepy, as in borderline sociopathic. I grew up in the fifties and sixties, and I believe that people cared about each other then. When someone got sick, friends and family responded with afternoon visits, help with child care, meals, laundry and housework. I can’t recall a single incident when illness diminished the value of a friend or family member. While topics like “cancer” and “death” may have been taboo, people with illness were encouraged to talk and were listened to with concern.
In the year 2010, that concern seems to have been directed back toward the self, as in “you’re not going to talk about that, are you?” Waaaaaah. I just wanna have fun. “Hey listen, honey, are you up for a movie?” “No?” “Well, listen, when you feel up for Starbucks or catching a movie, you give me a call, okay, sweetie? Love you. Bye.”
It’s hard to trace what happened to compassion. I suspect the move from one-income to two-income households played a role. Nurturing the sick was a traditional feminine role that got devalued in the change of currency.
I don’t believe that New Age philosophies have done us any favors in this regard. Now, if we’re sick, we’ve brought it on ourselves with negative thoughts, karma, or worse, we have made the choice to be sick. It doesn’t seem to matter that this “choice,” by all accounts, lies somewhere in the unconscious. We are responsible. These philosophies in no way suggest that we are undeserving of compassion, but the philosophers like to suggest that they do.
In spite of my experience that nobody gives a damn, I continue to feel compelled to talk about my illness because it dominates my life. Pain, disability, treatment, research, medical ethics, and efforts to reach out and create a conversation, have become my life.
My younger friend is more accepting of the cultural disdain for sickness. She points out that it’s a youth culture. People want forever youth and they want to live forever. I am not as patient with these selfish attitudes as she. It may be a difference in the times we grew up.
I see it as a waste, this attitude that grabbing all we can is what we’re here for. I believe we are here to develop something lasting for the spirit. We do that by helping one another and by standing up for truth and justice.
Maybe the healthy aren’t interested in talking about illness—particularly iatrogenic illness– and its social, political and spiritual implications. However, those of us who are suffering may find solace or purpose in the conversation.