The Social Aspects of Illness

by Joan Harvey

Like most people of a certain age, at any one time I have the unfortunate experience of knowing several people, some close, some not, who have cancer. It has become standard for the friend or spouse of the ill person to join one of the many message boards devoted to the subject and post updates to keep their friends and relatives informed. Others use Facebook to share information. Currently there are three people whose lives I follow, mostly from a distance, all with serious forms of cancer, one newly diagnosed but metastasized, two others who have been fighting for months and months.

I began to think more about the social aspects of illness when today’s usual protocol was not followed. It’s a truism to say we often notice things more in their absence, and it was the lack of shared information when someone I cared for was dying that made me aware how accustomed we are to being included in the progress (or lack thereof) of the cancer patient and how we come to depend on receiving a steady stream of updates on the ill. When this doesn’t happen and we aren’t notified of all the steps toward healing or death along the way, we feel cut off, and this can create a sense of deprivation.

When the unusually gregarious and much-loved man mentioned above first disappeared from public sight, his famously anti-social wife would only say he was ill, with no further explanation. No other information was given out as is usually done by a friend or relative. So the attempt to get information began: a behind-the-scenes series of phone calls, questioning, and gossip among his many colleagues, patients, and friends. Through the grapevine I eventually learned he had cancer; then a little later that it was pancreatic cancer. Eventually he wrote a very warm descriptive letter of his condition that was posted on his website, and finally there was an address to contact a friend of his with messages, though most of these were not returned. We were asked not to visit (I went to the hospital before this message went out and so was able to say goodbye) or to send any cards or flowers to his wife. There were none of the standard day-by-day or week-by-week reports of emergency trips back and forth to the hospital, or of how he was faring; we couldn’t watch his illness, or feel as if we were included in sharing the remaining days of his life, however remotely, as we’ve grown used to doing in real time. Before he died he managed one more long public letter saying he was working to be grateful for his extraordinarily painful death. At least he was able to tell his own story. Eight short weeks after his illness was announced, he was gone. A large memorial service was arranged by his patients, colleagues, and friends, and attended by hundreds of deeply grieving people. His wife did not attend.

On the other hand, due to the internet, I have almost accidentally received near-daily information about people I barely know, or don’t know at all. I was Facebook-friended by a woman with a teen-aged daughter suffering from brain cancer. The mother is a friend of friend, and lives in my area, but I’ve never met her. Her posts are often heartbreaking. Her brave daughter is in and out of the hospital, is rushed to the emergency room again and again, has to raise funds through Go Fund Me, is denied experimental drugs by her insurance company. The situation is getting worse. I follow her story with pain and empathy although she is a stranger to me. Her story is similar to that of a friend of mine, a single mother of a 9-year-old who also has had to raise money, has been denied drugs that the doctors say would help, and so on. I’ve taken this friend food and given her some money, and read her posts with hope and fear. The posts from both of them are very real, not prettying up or playing down the pain, but also expressing moments of respite and even joy.

Finally, at the other end of the spectrum from deprivation of knowledge about the course of a beloved person’s illness is the inundation of news I started to receive when I was recently asked to pass on information about a woman I know (but not well) to members of my family who know her better. In reading an entry by her daughter on the unfortunately named website Posthope, I inadvertently got on a mailing list that fills my inbox daily with dozens of messages from her well-meaning friends, many of whom I’m acquainted with, but only casually. The messages are full of love and hope and wholesomeness; some even write quite long letters, always relentlessly cheerful. But, as these lovely people are not really my kind, the warm messages of candles lit and prayers offered, of promises of hugs and ice cream sundaes and white light, are lost on me. I tried to remove myself from the list, but failed, and the emails kept pouring in; as first her prognosis looked good, then looked bad, then looked good again, then again bad. Her daughter has been exemplary in keeping people up to date. I could easily have gone back and tried harder to remove myself from this string of mail, but I began to be somewhat absorbed; it was a glimpse into a private, though, to me, a not particularly interesting life. Unlike the posts of my friend, there is never a note of despair or darkness, although the situation of this woman is actually much worse.

These days, of course, some people share every detail of their health, their sex lives, their meals, on social media. As a usually private person, I find this overexposure fascinating, though sometimes I’m embarrassed by it in spite of myself. While I complain about lack of knowledge of the health of others, I’m generally very private about my own life. Raised by a doctor father who thought most people were hypochondriacs, and a tough-as-nails stoic mother who didn’t believe in medicine or doctors, there wasn’t much place for illness in our home. So, as an adult, for a few years when I was seriously ill, 103 pounds at 5’9”, barely able to walk a block, I withdrew from the world in shame. In retrospect the worst thing about this withdrawal was that I missed spending time with a then-healthy friend who I thought would judge me for my illness. But shortly after I got better, she got cancer and died, and due to my retreat I’d missed years when I could have spent time with her.

I know others who have had terrible diseases who have done the same, completely removing themselves from the world and from social life. I even knew a wonderful woman who was healthy but thought, due to her very old age, she was too ugly to be seen. I’ve had partners whose lives were marked and marred because, as children, their parents kept from them the seriousness of illnesses of brothers and fathers who subsequently died. Lack of a shared truth can be damaging. And yet I’m guilty of the same behavior. When I had a football-sized tumor in my abdomen, I told almost no one. The doctors were worried, though, perhaps oddly, I was not. Because I was not worried, I didn’t tell my son, and he was angry with me for a long time after when he found out.

I’m from a family of a certain type of what might be called curmudgeons (though they’re also the most generous people I’ve ever met). We don’t do a lot of sharing. Only two of my five siblings are on Facebook. We love our friends deeply but, while we’re good at irony, cynicism, and bad puns, we have almost no vocabulary for condolence. We don’t hug a lot; we don’t observe rituals; New Age jargon gives us the creeps. We don’t do thoughts and prayers, and euphemism is difficult for us. It’s easier to give money, take meals, pay visits, than to write a note full of hope when there is none. We actually do care a great deal for people, but show it in other ways. One of my sisters was instrumental in supporting an ill friend of hers for years and actually helped administer the end-of-life drugs her friend had lobbied to make legal. When my other sister’s husband went through a long, difficult treatment for cancer, she could not bring herself to join one of those cancer websites or post anything on Facebook, but instead wrote lovely detailed letters to a list of the friends who were concerned.

Of course it should always be a personal choice about how private to be about one’s illness. And how much to share about a loved one is often the choice of two people. Though not quite so far out on the anti-social spectrum, I can in some ways sympathize with the woman who didn’t go to her husband’s packed memorial—it might have been difficult to hear him eulogized and wept over by people who knew him far less well than she. But she then posted a notice on her website forbidding people to give her even so much as a sympathetic look, or to hug her, or offer her any condolences about his death. My first reaction was to think that because she couldn’t control her husband’s dying, she sought to control the reaction of others to it. But there is the possibility of deeper understanding: it could be hellish in a period of rawness immediately after a partner’s death, to be put on the spot in public and forced to respond appropriately. Only a narrow range of response would seem acceptable; one would have to be suitably sad, grateful for the concern of the acquaintance, brave without being sunny and cheerful, and also careful not to burst into embarrassing tears. There would be the awful sense of being on display while at one’s most vulnerable. So, for some, a time period of self-protection may be necessary. And yet, a death of this sort pushes one to trade the deep connection with one person for the perhaps shallower, less-in-tune, but still worthwhile, connection with the many. Or else go it alone.

We are social creatures, and there is a reason there are traditions where people meet to mourn the death and try to look after the survivors. With our increasingly public lives, private people have to find ways to negotiate exposure in ways that work for them. Because although we are essentially alone in pain and death, we are all enmeshed, and never alone in the minds of others.