Balls and Walnuts
more than you ever wanted to know
Don’t worry, be happy
Last night, Karen and I spent a good bit of time reading Corn Dog’s blog. She writes intelligently and poignantly about illness and healthcare, and her non-medical posts are entertaining, too. Consider this a big shout. Corn Dog deserves a bigger audience.
Patients with serious illnesses have to deal with a lot of emotional garbage. ‘Garbage’ excludes the important work: coming to terms with what your illness means to yourself, to your friends, to your family. ‘Garbage’ is garbage, a huge and largely unnecessary manure pile of guilt.
Anyone who has been ill — life-threatening ill, I’m not talking about broken bones here — knows what I’m about to say, or will recognize it soon enough. You see, the patient’s family and friends expect her to cheer them up. They want the patient to say to them, I’m okay. Really! I’m going to be okay, too. Nothing wrong here, oh no.
They want to hear these things because they’re scared and threatened by the patient’s illness. This fear breeds many odd behaviors, none of which help the patient. I’ll mention briefly the blame the patient shtick: “You have cancer? Oh, my. I’m so sorry. Did you smoke?” The healthy person searches desperately for reasons why it cannot happen to him. Doctors, friends, family members — everyone wants to blame the patient for her illness, for her “failure to respond” to treatment, for her “bad attitude.” The unstated assertion: If it’s your fault, I feel much better.
The “Don’t worry, be happy” mindset is a thinly disguised version of “blame the patient.” The idea is that a patient can cure his disease by thinking happy thoughts . . . watching nothing but comedies . . . “visualizing” his cure. Do such strategies empower the patient? I suppose it gives patients the illusion of empowerment, but it also sets them up for a boatload of guilt and regret if they “fail.”
Please don’t misunderstand me. I don’t think there’s anything wrong with having a good attitude and doing whatever is necessary to pull out of depression. Quality of life is paramount, after all; no matter what happens with this particular illlness, the patient (and the rest of us) will die eventually. Shouldn’t our days on this planet be as joyous as possible?
No, the problem is more insidious. Despite a patient’s best efforts to stay positive, she will have bad days, feelings of hopelessness, despair. Her cheerleading friends, those folks who demand that she be chirpy and full of sunshine, and who suggest her recovery depends on a bright outlook — these folks are thinking of themselves, not the patient, and they could be doing a world of hurt.
I’ve mentioned before that Karen’s early years with chronic illness sucked big ones. She being the no-bullshit Vulcan that she is, her attitude was, It’s My Party and I’ll Cry if I Want To. Or, more accurately, It’s My Party and I’ll be Morbidly Depressed if I Want To, and If That Makes You Unhappy, Deal With It. (Yeah, that song never hit the Top 40.)
I’m hoping I can get Karen to chime in on this discussion. I think she would agree with me that the friend/family member has to walk a tightrope. It’s good to be supportive; it’s good to try to cheer up the patient. But it’s wrong to criticize a patient for her periods of despair. Imagine saying to a cancer patient, “You can’t let this get you depressed. It’s bad for your immune system and you need all the help you can get to kick this thing!” Now, on top of being depressed, the patient may feel guilty for being depressed. How many seriously ill people say to themselves, “This is all my fault”?
It’s natural to help a friend when she’s down, but the kind of help matters. Telling the patient how she should feel or what she should do to get better usually doesn’t help. (And, yes, I know I’ve been telling my friend and her husband what to do, but they solicited my advice, and I’ve been apologetic about the whole thing, too — I’m trying to lessen the obnoxiousness of my nagging, I guess.) Relaying anecdotal stories (Shirley took a course of green tea enemas for six months and it shrank her tumor!) really doesn’t help. And trying to guilt trip the patient into shaking off her despair is downright destructive.
Here’s what I think is the best thing to do when confronted with a loved one who is depressed over her illness: say, “How can I help?” and then make sure she understands that the offer is open-ended.
Anything.
Any time.
It pisses me off when I think about my friend’s friends, the ones who are reassuring themselves with their blather and doing very little to help her. Why can’t they offer to come over and cook for her one night a week, or help her clean, or do her errands? Even if she decides she doesn’t want their help, I suspect it would make her life a bit easier to know she has folks whom she can depend on for practical, substantive assistance.
Keep it simple. “How can I help?” And make sure she understands the offer is sincere, because those words could be tossed off lightly, with little meaning.
Also . . . considering the fact you will be in the minority of enlightened friends, there’s something else you can do to help. The patient will have been undoubtedly inundated with crap from others about how bad it is for her to be this depressed. Why not tell her it’s okay for her to feel this way?
***
Of course, now I’m trying to dredge up everything I’ve said to my friend, hoping to God that I’ve been practicing what I’ve preached.
D.
Part of what makes those of us with chronic illness feel so alone is how few people don’t say “Oh, cheer up!”
I had one very dear friend last year who really helped me get through going on dialysis by simply holding me while I cried. I felt comfotable telling him I was scared, because he always told me he was scraed too, or that it really was scary. I needed that more than a thousand suggestions that I should have a bright outlook.
All of this? Completely true. Sometimes, it seems no matter what the medical problem, everyone around you expects you to feel guilty “for your part in contracting it”. I usually asked this type of person exactly what I should have done, to not have ended up with Endometriosis. The people who simply made it a point to be there for me, to listen when I needed to whine, or check on me when I was too depressed to leave the house? Those people are still my friends, ten years after the worst period. And there isn’t anything I wouldn’t do to help them out.
Another aspect of this weirdness? The attitude towards money and medical bills. When I had Septicemia, and a part time job with no insurance, well meaning people kept trying to assure me that financial help was available, and that if I was unable to get it, I just wasn’t trying hard enough. And I cannot count the number of people who pointed out that a more efficient savings system would have prevented the financial hardship. (Because, you know, I hadn’t spent all of my money on the medical problems leading up to that…)
Um, not that I have strong feelings about all this, or anything… :”>
But kudos to you, Doug, for tackling this subject!
When my aunt was told that her right leg would need to be amputated, she almost immediately said to the doctor, “Well, at least this hospital saty won’t cost me an arm AND a leg.”
My family was horrified. How could she joke about such a terrible prognosis?
But then as she started to get sicker, everyone wanted her to “keep up her spirits.” You’re so RIGHT about family wanting the ill person to keep an attitude that the visitors will feel comfortable with.
We really have such little training in coping with death (or birth for that matter). We’ve come to expect, for example, that the husband will be an unrelenting coach during childbirth, a bedrock of support for the wife. What if he isn’t that? What if he gets scared or needs to leave the room to pull himself together? That’s kind of frowned on in most birthing rooms.
We’re seriously disconnected from these processes in modern life.
This is a really interesting topic that not many people like to think about. In my opinion, one of the best books written about the illness/death process (I’m talkin’ terminally ill) is “The Death of Ivan Ilyich” by Tolstoy.
Seeing someone else sick reminds us of our own mortality and the randomness of life, which can be a pretty scary thing. However, like you said, we all die, and sooner or later we all have to come to terms with this fact. Sometimes it takes being sad, angry, or depressed to ultimately reach a place of acceptance.
damn, you’re right. She does deserve a bigass audience. Her dogs alone deserve them.
When I was 8, my 7-year-old cousin died of cancer. Everyone my age asked me how he managed to smoke without getting in trouble with his parents.
Thanks for the thoughtful comments, everyone, and thanks for backing me up. (Oh, I can handle dissension, but it’s still nice to get the support.)
Fidelio, welcome to the blog, and thanks for the book recommendation. I had heard of that book, but I haven’t read it.
Kate, I need to pick up my jaw from the floor now.
My mom HATED people telling her how strong she was, and that she’d get through lung cancer just fine. (She died last December.) She’d tell me, “I’m not strong! I’m scared as hell and I don’t know how not to be!” I encouraged her to rant or scream or cry or whatever she needed to do, but she felt somewhere inside that she was obligated to ‘be strong.’ There were very few situations in her life to which she was unequal; cancer totally threw her and I don’t think she ever truly came to grips with it.
Sorry, no real point to that story. Sometimes life just sucks and there’s nothing you can do.
Whoa! Thanks for the big plug and many thanks for the understanding. Everything you said is so accurate. In my case, the more chemo I did the more depressed I got. It was as if the lower my white count went, the lower my spirits did too. I have some really outstanding friends and boyfriend (now husband). One friend collected up a bunch of really funny hats for me when I was bald and some really naughty sleepwear. Another friend flew over from Phoenix with some beautiful scarves she made me. Another friend gave me some body work gift certificates. And my boyfriend never stopped thinking I was just me – no matter how down I was nor how many stitches I had in my breasts or under my arm.
I read this and the previous post, and I haven’t had time to respond. At least not properly.
I don’t think you’re wrong or self-indulgent or whatever else you’re feeling to be confused by this topic. It’s about as deep as we go as human beings. Our last hind-brain response is that of self-preservation, and fear of death is built into us. For good reason, of course.
We don’t handle death well in our culture, and I don’t think that people are being particularly insensitive when they do the things that you and others complain about: they’re doing the things that our culture seems to expect from various movies of the week and inspirational cards and posters… you know, where everyone gets better in the end. Where positive attitude makes the difference. I think that, really, they just don’t know what else to do. And they don’t want to dig too much, because in our society grief is a private thing.
This is a deeply complex topic, and I don’t blame you (you, Doug) at all for being confused about it. Hell, it confuses me and I don’t have the additonal complications of being a primary healthcare providor, or of having someone close to me severely ill.
My last experience with terminal illness was when my dad died of lung cancer in 1987. All of the things that you talk about happened. There were people who helped, and people who didn’t, not because they were stupid or insensitive or mean, but because they didn’t know how.
I think it’s something that we, as a society, have to work on.
Thanks, folks. It does help to know that others are thinking the same thoughts, if you know what I mean.
Dean, I understand what you’re saying about cultural influences, and I suspect you’re right, but it’s hard to be forgiving when folks are well-meaning but hurtful.
And now I have another post kicking around in my head and it’s not any lighter than this one. I’m thinking of taking a break after this . . . maybe get Professor Snape down here to write the Thursday Thirteen 🙂
Doug, great post. I’m dealing with the “be cheerful” It’s all in your head thing, over here too. I need to send people to read this.
Thinking over here that terminal or chronic illness gets the same reaction for the ill person as death does for the near family members – maybe some of the same people who had been cheerleaders earlier.
I have heard a few times from rather distant acquaintances, “oh, your mother died of lung cancer? was she a smoker?” and, answering that she was, the person obviously has found order in the universe once more. On the other hand, no one close to me did that. I’m ever so grateful.