Awkward health talks
In this Sunday's column, I fielded a question from a person who often has to deal with other people's less-than-optimal responses to the letter-writer's health problems. The thousand natural shocks that flesh is heir to give rise to a thousand-and-one etiquette dilemmas, and I've dealt with some of them in my column before.
I addressed the problem of a person with scleroderma who can't shake hands--and who happens to work in the gladhanding field of advertising, at that. I was delighted when the Scleroderma Foundation asked if they could print my answer in some of their materials. In my column I also mentioned that perhaps the letter writer could get cards made up with information about scleroderma that he or she could give out--well, guess what, the Foundation does make such cards. Remember, if you have a chronic illness or disability, that you don't have to reinvent the wheel. Other people have faced the same problems you have and have come up with some elegant engineering solutions.
Not all disabilities are physical. A stay-at-home mother with clinical depression wondered if she had to disclose her problems to people who asked why she hadn't returned to work. The answer, of course, is "Goodness no." But that's exactly the kind of thing that the depressed mind can find hard to remember--that you have the right to privacy and to standing up for yourself.
This letter writer didn't say what his or her problem was, but said that walking and talking was difficult, and that often people assumed that he or she was drunk. In this one I go a little bit more into who you might want to have "the talk" with and who you don't, and some options for how to disclose.
Finally, here are some wonderful blog posts: one about a "Cancer Rant" published on Craigslist, and follow-ups from my readers part I, II, and III.
I also wrote about maintaining a blog during cancer. As a result of this, several people e-mailed me wonderful websites: Lotsahelphinghands, Care Pages, and CaringBridge. These websites make it easy to set up an updates page, coordinate volunteers, and the like. Every now and then this "internets" thing is pretty neat, isn't it?
Finally, I have to share one of the most profound "awkward health talks" stories I've ever read. Mr. Improbable and I have a friend, Richard Wassersug, a biologist who won the 2000 biology prize for taste-testing tadpoles. (He had a very good reason for doing this, it turned out, and while tadpoles were definitely harmed in the making of his study, the graduate students who tasted them had undoubtedly eaten much worse.) Richard is a survivor of prostate cancer, and owes his survival to one of the most effective treatments: castration. Men who have survived cancer in this way don't usually talk about it. Richard is different:
My daughter and I were talking about outing oneself — the act of disclosing one’s inner identity. The discussion was not purely academic.My daughter and I were talking about outing oneself — the act of disclosing one’s inner identity. The discussion was not purely academic.“Dad, when most people out themselves, they open the closet door and just come out,” she said. “You, Dad, you went through the wall.”“Dad, when most people out themselves, they open the closet door and just come out,” she said. “You, Dad, you went through the wall.”
I had just told my daughter that I was a eunuch.
Richard turned his back on shame and entered his new condition with the curiosity of a scientist and the courage of an explorer. He wrote an article for OUT magazine on the experience of eunuch-hood, and has done a fair amount of academic research on the biology and history of eunuchs. Richard may no longer be a male, but he is for damn sure a mensch.
I would never presume to tell another person how to handle their particular illness or disability. Just because you got cancer or wound up in a wheelchair doesn't mean you're morally obligated to turn your life into an inspirational made-for-TV movie. You can go ahead and keep your illness on the sidelines; you can continue to be the flawed and occasionally annoying person you were before (there's this sappy cultural narrative that sick people are supposed to be terribly good, like Beth in "Little Women," which is hardly fair); you can decide that it is in no way your responsibility to educate the temporarily able-bodied masses. That is your prerogative. You don't owe anyone access to your body, including information about its functioning. Your body is yours. Privacy can be empowering.
But coming out of the closet can also be empowering.
You didn't get to choose your illness or disability. You do get to choose how you communicate about it. If you have to have awkward health talks, I hope they can come from a place of self-awareness, autonomy, and strength.
Comments open if you want to share your own stories.
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I often wonder at what point does one disclose a disability? My son had a stroke when he was born, and has CP as a result. I have a typically developing daughter as well. When I meet old friends and acquaintances, they naturally ask me about my family. I feel like I'm hiding something if I don't explain that my son has a disability, and I feel like I'm giving too much information if I do disclose this. Also, I had a recent surgery for thyroid cancer which left a prominent (I think) scar on my neck. Should I blurt out that I had cancer?! I've had perfect strangers ask me about the scar on my neck, and they usually are surprised to hear it was cancer surgery and not a maniac that slit my throat. . So my question is, how much information is too much information? Is there a point when it is not polite to disclose such things? *I* am not embarrassed about talking about either health issue - I simply want to save the other person from being embarrassed about talking about them. Any advice?
Dear Miss Conduct,
I love your column, however I take exception to your point that Dr. Wassersug is no longer a male. Is a woman who has had a hysterectomy no longer a female? I suppose that you were using poetic license to make your point as to what a mensch he surely is. That said, thank you for all of your good common sense in dealing with our neighbors.
Robin says: This is language that Dr. Wassersug has used in conversation with me, as I recall correctly.
I hope people who "do get to choose how to communicate" their health problems will bear in mind that many people don't need or want to know. Richard might remember that his acquaintances are not all going to be grateful or think he's a mensch because knowledge of the stae of his genitalia was foisted on them. Thanks, Richard, for NOT sharing!
Having a health problem does not obligate everyone to want to learn of it. Please make sure your listener needs/wants to know!
As someone who has lived with invisible chronic illnesses for over 30 years, I'd say to Irene that although not everyone wants to learn of your chronic illness, sometimes it's best for all concerned. Richard can choose whether to "out" himself - probably based on the relationship. Tricia's dilemma re: what to say and to whom is an issue that anyone with a life altering experience faces. It helps to develop antenna regarding how others will respond. As a career coach for people with chronic illness, my experience is that you HAVE to disclose only if it's getting in the way of how people percieve you or your performance.
Yah, the coming out process around disability is crazy. I have a very hidden physical illness and have other stresses in my life on top of that. It has taken me many years to sort out not only what is the physical illness and what is the psychological stress, and when or if to speak to both, or only name one. I've always been a very honest person, simply because I'm no good at lieing and it takes a lot of energy to lie, but with this "coming out" I can no longer remember to whom I've told what. I am stunned sometimes when after a relationship, work or otherwise, has gone on for several months and then the person expresses surprise or even annoyance that I"never told them". hmmmm
I've had similar problems with my own autoimmune disease; it's obviously not contagious, and it's also in no way life-threatening, but when it worsens, which it does every so often, I have physical symptoms that are highly visible and extremely weird-looking. So, either I have to tell people I'm staying in because I'm sick, which leads them to believe I have an acute illness like a cold, or I have to explain things, which sometimes takes a while.
The question of when I should mention my illness and when I shouldn't became a problem when I experienced a worsening of symptoms for the first time in months and couldn't go to my summer job. My sister asked why I hadn't told my employers that I had an autoimmune disease before I started work, and I answered that it would have been totally out of the blue, and probably inappropriate (as well as pretty violating for me).
So, I simply keep it personal unless I need to mention it.
As someone with chronic health issues, I highly recommend the article "The Spoon Theory" at http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf by Christine Miserandino as a fantastic way to explain to others how it feels to live with chronic illnes. Christine has lupus and has set up the site ButYouDontLookSick.com to share helpful essays, support and suggestions for people with chronic conditions.
Thanks for the Spoon Theory, MGW. It's a helpful way of looking at my partner's cardiac disability. Our friends see him up, being sociable, getting around; I see the next day, the five-hour nap. I'm thankful he can do as much as he can, but pacing himself is always the big issue, and it's hard for others to understand.
I meant to comment on this days ago. I am the person "B.C." who mentioned appearing "drunk." At the time, I didn't have a diagnosis to work with - just a preliminary "this is most likely the case" diagnosis of ALS. As I was 26 at the time, telling people it was ALS would've been like handing out invites to my wake and funeral, which is a total buzzkill at a party, but I wanted to make clear that I wasn't drunk, that my mind was sharp and that I wasn't a joke. It was tough.
Since then I got a diagnosis, cheerfully not of having ALS, that gave me a name and a prognosis to work with. As I use either a cane or a walker, depending on my mood,my disability is now super obvious, which is a relief in many ways. I can't keep being a cripple on the DL, unless maybe if the person I'm chatting up is blind, so I just roll with it. Some people choose to ignore it, and others ask me a million questions, and I make no judgements either way.
Nobody knows the polite way to proceed with a disabled person. I guess it's probably to chat as though nothing were out of the ordinary, but I can't hold a person's curiosity against them, unless they press for details after I've made it clear I don't want to talk about it, which a Target cashier did once.
I can't help people with their invisible disabilities - when to disclose and when to disguise is going to be a judgement call - but for people with obvious physical ones, I find that rolling with it like it ain't no thang is the easiest course of action. No sense ignoring the 800 lb gorilla in the room.
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