broadsideblog

When blogging about illness, what’s TMI? The NYT wades in — and angers many

In behavior, blogging, culture, domestic life, Health, journalism, Media, Medicine, women on January 16, 2014 at 12:49 am

By Caitlin Kelly

Maybe you’ve been following this recent firestorm?

The one in which Salon, a popular American website, called The New York Times’  former executive editor Bill Keller, and his wife, Gilbey’s gin heiress Emma Gilbey, despicable?

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Both of them wrote about cancer patient Lisa Adams, who has advanced breast cancer.

From Salon:

Lisa Bonchek Adams is a mother of three living with Stage 4 breast cancer. She blogs and tweets about what she is undergoing and the decisions she is making about her health; she does so frequently and to a large audience that’s rooting for her. And to a prominent husband-wife pair of journalists, she’s somehow offensive.

Bill Keller, the former executive editor of the New York Times, published an Op-Ed in that paper today indicating that Adams, in spite of the image of positivity and strength she generally broadcasts on her social media platforms, is dying and doing so in a manner somehow undignified; Keller draws a comparison between Adams and his late father-in-law. “His death seemed to me a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America.”

That “trench warfare” has, for Adams, included a variety of medical studies; Keller indicates that Adams’ personal decisions about her health, and her expressing herself online, somehow detracts from people who choose not to undergo experimental treatments or who choose to slip under with less of what is traditionally known as “fighting.” He even finds a Stanford associate dean who is willing to say that Adams “shouldn’t be unduly praised. Equal praise is due to those who accept an inevitable fate with grace and courage.”

Here’s an analysis piece from NPR’s blog:

the piece enraged a lot of Times readers, according to public editor Margaret Sullivan, that she heard a great deal of negative feedback, and who herself said “there are issues here of tone and sensitivity.”

Boy … you can say that again. By closing the piece with a piece about a dean who “cringes” at Adams’ alleged embrace of a “combat metaphor” (unsupported by any quotes from her own writing) and salutes those who show grace and courage, Keller implicitly suggests that to handle your disease as Adams has is one way to go. The other way to go is with grace and courage. And that’s very unfortunate.

Adams herself says that Keller, along with his wife Emma Gilbey Keller, who also wrote a controversial column critiquing Adams’ handling of her cancer (that was in The Guardian and has since ), have misrepresented the basic facts of her medical status, and Keller has already admitted he got the number of kids she has wrong. These disputes have been pretty thoroughly inventoried in a . And writers at outlets including and have been sharply critical of the need to explain to a cancer patient how to handle (and discuss) having cancer.

This is an issue I’ve thought a lot about — how much to write or blog about one’s illness or surgery or medical issues — and how much to never share beyond one’s circle of intimates. People, in my view, who are the ones who are most likely to have actually visited you and your family in the hospital or come with you to the chemo suite, perhaps.

One woman I know, barely, professionally, shared a lot of detail on Facebook about the effects of chemo as she was treated (so far, successfully) for breast cancer. But there was a lot I wish she had simply kept to herself.

She got a lot of emotional support, which I understand — why she craved it and why people offered it.

My mother had a radical mastectomy in 2003. She is alive. She has survived multiple cancers, including thyroid and a meningioma, a form of brain tumor.

In other words, I already live in daily fear of my genetic heritage and have little appetite to read anything about cancer.

That is not a judgment of people who do, but the effect of knowing too much firsthand already.

I get my medical tests and keep a careful eye on my own body and that of my husband.

I’ve already stared down plenty of doctors and Xrays and seen too much and heard too much. I saw my mothers’ very large brain tumor on the Xray and had to give informed consent for her; here’s the piece I wrote about it for Chatelaine, Canada’s largest women’s magazine.

Who am I to complain when I, too, have written these sorts of stories? They can, I know, be helpful to others and provide comfort to the ill and to their families.

A friend my age died of cancer in January 2006 and several men in my apartment building are currently fighting cancer.

It’s not that I don’t care about people who are ill. It’s the reverse. Instead, I find myself worrying about people I do not even know.

For me, that’s not the best choice.

I have really mixed feelings about this sort of thing — none of which suggests I’m right.

How do you feel about someone sharing a lot of very graphic detail on-line about their illness?

  1. Personally I wouldn’t do it, but if someone wants to blog about their battles with a disease, then by all means let them do it. If people are grossed out by it or offended or something, they don’t have to read it. A lot of people actually find this sort of thing inspiring, and I heard of a rockstar who actually vlogged about his battle with brain cancer and even had the operation filmed. Apparently very inspiring, according to many people.
    I’m not sure what exactly upset the guy from NYT, but I think he was overreacting and being a little condescending and mean.

  2. In some ways, these situations are similar to when a person shares the play-by-play of her pregnancy or luxurious summer vacation or lunch: I feel allowed “in” a little too much. It sounds like the grander thing you’re getting at, that maybe this dispute is bringing up for air, is that while the notion of keeping things secret CAN increase anxiety the solution isn’t necessarily to broadcast every single daily detail. With the concepts of privacy and boundaries no longer being in vogue, we seem to have lost some of the intimacy that accompanies both joyful and heart-wrenching personal experiences.

    Thank you for continuing this interesting conversation!

    • “With the concepts of privacy and boundaries no longer being in vogue, we seem to have lost some of the intimacy that accompanies both joyful and heart-wrenching personal experiences.”

      Eloquently stated. I agree. Thanks!

  3. i’m going to say that it is a ‘to each her/his own’, in these situations. as a potential reader, you can decide if it’s too much for you and move on as needed, or if it is of interest to you for whatever reason. it does have an element of voyeurism to it, though i think part of that is that the reader has a chance to experience things that may scare them, but never have to fully live.

    i understand why people feel compelled to share personal things, and there are many reasons, and i think that when these things are painful, sometimes the writer loses sight of normal boundaries as far as sharing. i forgive them this, as i know it was most likely an extremely painful or passionate experience for them.

    as for the critical op eds, they seem mean-spirited without reason.

    • i understand why people feel compelled to share personal things, and there are many reasons, and i think that when these things are painful, sometimes the writer loses sight of normal boundaries as far as sharing. i forgive them this, as i know it was most likely an extremely painful or passionate experience for them.

      I have been assigned to write a piece like this for a large women’s mag. It makes me very nervous — as boundaries are so individual. Some people are very eager to share a LOT and others less so.

  4. I think we ought to be able to write about whatever we want or, perhaps, in this terminal writer’s case: needs to. As for anyone having a fit over it, who cares. People make fools of themselves every day online. Just my opinion but I wouldn’t even engage with that couple. For any reason. Just because they agree with one another does not mean they are right. Nobody may be right at all since we are all only human. And one human in this soap opera gone real is dying. Strike me dead should I ever criticize a dying person. We live in an age of useless selfies serving no purpose whatsoever. If we we cannot accept what a dying soul needs to do, we ought to have thè common human decency to just pass on by. Quietly. Nobody holds a gun to my head; I read what I want.

    • Thanks for weighing in.

      • Pleasure. I have PTSD and was once too ashamed to talk about it when it first happened a few years ago. Now I would tell a fence post if it would listen. Turns out many tell me I am helping them while healing myself. Double gift. :). Who knew.

      • Sorry to hear this — but, yes, very true indeed that there can be catharsis in describing something while being helpful to others. I tell people about my con man experience for that reason; both to keep purging myself of it and to warn other women how vulnerable we can be(come) to such predators.

        I’ve been assigned to write an essay about my experience with my mother for a major women’s magazine. It will not be easy to pull off, but if I can, it will be helpful to others in similar situations, I know.

      • OH! If I miss it, please let me know, I’d love to read that one. You will do it well, I just know it.

      • Thanks for the vote of confidence! :-)

        I will.

      • Not that you need it, you write very well – glad to help in any small way I can :D Happy writing.

  5. The ill person’s post is there for people to read … or not. The readers who seek its comfort and information should have the opportunity to do so. Those who don’t, don’t read it.

  6. I see the voyeurism…however it is obviously not unique to illness. TMI of this variety is just the extension of TMI in every other circumstance. Having said that, I found Christopher Hitchens’ writings on his cancer in the Atlantic a few years ago to be some of the best journalism I have ever read. He treated his illness like he was a war correspondent in “Tumortown.” And in this manner, “reporting” on the illness may not be so much the act of a voyeur, but of a reporter–to share in a somewhat Victorian society information that might never be shared with the public in a humanizing way. After all, aside from our own family’s aliments, or close friends, the most we hear of cancer is by way of statistics. Or perhaps the sharing helps to prepare the “well” for the fate that awaits us all. Personally, I have shared my illnesses, not on a blog, but with research scientists. I do that because they need the data to find cures. So, if you feel the need to share, share with medical researchers first, openly.

    • Thanks, as always, for your insights.

      I didn’t read Hitch’s diary (for the reasons I name in this post) but I know people were deeply moved and impressed by his ability to do so. It’s very true that until or unless we are personally involved with cancer (or other serious illness) we have no idea of its costs, physically, emotionally, financially. A friend of mine got (and survived) very early stage breast cancer — she is a Phd psychologist, so a pretty bright person, clearly. She found the experience overwhelming. Through her, I first heard about “chemo brain” which only much later got press coverage.

      I’m sorry you have such personal experience with this. Sharing with research scientists is brilliant and generous of you. I wish you the best with your health.

      • My illnesses were not life threatening in the end, but could have been if research didn’t find solutions through volunteers over the past twenty years. I didn’t want to leave the impression that I am as ill as those currently battling cancer!

      • But you make an interesting point — and one I think gets very little notice or media attention. That medical knowledge has to come from patients. I’m glad you are doing better!

  7. I didn’t feel that the New York Times article was overly critical of Adams. He’s just saying what’s good for one may not be good for others. I also didn’t really get a sense of how you feel about this subject. You seem to disapprove of the op-ed but you mentioned not caring for Fbook post done in a similar manner. Somewhat confusing.

    • I think Keller and his wife have many other things they could choose to write about, and using the bully pulpit of the NYT op-ed page seemed bizarre to me.

      I find that a different venue than a Facebook feed where people are presumably speaking to their intimates — yet they often are not — so when they choose to post grisly medical details, even photos of injuries (!?), I find it too much. What’s the point? Even more sympathy?

      I shared very very little detail on social media of my 2012 hip replacement. For payment, and for two specific audiences, I wrote about it in much more detail. But I would never in a million years have posted a photo, for example, of my 12-staple incision. For what reason?

  8. This is a very interesting debate about not only this specific case but generally about how much of their lives people share on social media and the feedback/interactions they get. The more personal, articles or blog posts are, the more engagement there is and for the person sharing their life or illness, the enjoyment they get from interacting with a wide audience, makes them forget inhibitions and therefore may push them to do more of it.

    I have been touched by a similar story of a mother here in England who lost her 9 month old baby due to sudden infant death syndrome. She reported the tragedy, how she felt, what she did and didn’t do etc in her blog through poems that touched thousands of other mums and readers. I was one of them and i still think of her story when i put my son to bed… something i wouldn’t have done so regularly as i don’t know anyone personally who has been through something like this.

    But as you say reading about other people’s illnesses or tragedies makes me worry and when i see the beginning of such a story i tend to leave it for later.

    Thanks for your engaging writing. Laura

    • It’s a challenging issue, for sure and one I’ve touched on in earlier posts as well.

      Some people, for whatever reason LOVE to be the center of a ton of attention, and from thousands, even millions of strangers. But I am not at all sure it’s a trade I wish to make, even as I’ve written some highly personal posts here as well. It often feels too much like some sort of striptease, where you really have no idea, and no control over, how someone is reacting to your material — giggling? sneering? about to cyber-bully you? empathic? I have dear friends, as most of us do, and they are the people with whom I am willing to be 100% vulnerable — not on line!

      But your story of the SIDS baby is an equally powerful argument for this sort of writing.

      Thanks much for coming by, making time to comment — and your kind words! :-)

  9. I read both articles written by the husband and wife about Lisa Adams and was completely put off by the tone and content. I thought they were mean and condescending about her illness, her delivery, and her content, none of which needed to be done.

    I am of the opinion that if one is not interested than one can move on to something else, but ugly stance taking for what appears to be intended to stir the pot and garner readers is just mean and certainly makes me disinclined to read anything written by them in the future.

    Being more than a bit like Jane Austen’s Mr Darcy who said, ” My good opinion once lost is lost forever, ” I think there are too many other people I’d prefer to read that temper their thoughts with a bit of compassion, something these two seem to lack completely.

    I also spent a great deal of time reading both the recent, middle, and early blog posts by Lisa Adams as well as some of her tweets and I found it both heartbreaking and helpful in the information she shares, particularly as someone who has experienced hearing the words cancer, and malignant, while in conversation with their doctor.

    My daughter was five when my doctor told me the initial findings of my pathology report and I had 24 hours to imagine a life where she might grow up not knowing me or how much I’d loved her while they were checking it for levels to determine what treatment I might need.

    I totally get why Lisa Adams is writing and tweeting about her cancer and treatment and I think the husband and wife who chose to tag-team her with their disapproval ought to be ashamed.

    As someone who once had cancer, I live with the shadow of it trailing behind me. A week ago, I received good news when another pathology report came back with clear margins meaning they had managed to get it all with two excisions and no further treatment was necessary. Ironically, I received this news twenty years after the first report.

    That’s twenty years of seeing my daughter grow up that Lisa Adams, barring a miracle, will sadly not have with her children. And while I don’t routinely read blogs that deal with cancer, I am grateful for those who make personal information available to people who might be going through something similar.

    When I was diagnosed twenty years ago, I had no internet to turn to or blogs about personal experiences. I had instead a stack of books from the library that spoke to me of five year survival rates and not much more.

    I understand your fear as it relates to cancer and family history, Caitlin. My mother survived ovarian cancer, a diagnosis she received three years after my own cancer experience and my first thought on hearing the news was not fear for myself, but for my then almost eight-year-old daughter and the bad genes she might have inherited.

    Like you, I try not to linger too long in fearful places, but also like you, I stay aware.

    Here’s hoping all this talk leads someone to the support they need or encourages another to check in with their physician over a lump or symptom they’ve been pretending might go away.

    Thanks for sharing your thoughts and providing a forum for others. This one touched a deep nerve with me.

    • Thanks much for sharing this….It’s clearly hitting a nerve for many people, and the Kellers’ arrogance has shocked those who don’t know the sort of world each has been moving in for a long, long time.

      Glad to hear your good health continues!

      • Could you say more about the ” the sort of world each has been moving in for a long, long time.”

      • Rich, powerful insulated by wealth, access and a sort of life most of us will never approach. Keller has hit the heights of American journalism, in terms of $ and power and Emma’s maiden name is Gilbey — as in the gin. I doubt they have done much struggle. Maybe they have. Their writing does not seem to reflect it.

      • Thanks, Caitlin. I understand exactly what you mean now.

    • Beautifully phrased: “As someone who once had cancer, I live with the shadow of it trailing behind me.” I’m sorry you live with this shadow, but I’m also grateful for your eloquence. May you have many more healthy years with your family.

      • Thank you, Rachel. The idea of a reoccurrence is always there, but I try to see it as more of a heightened awareness than something to obsess about. These days as I’m seeing more of the effects of 53 years of living reflected back in my mirror, I find it odd that despite having once worried about the possibility of living a life defined by five-year survival rates, I still occasionally have to remind myself that growing old is a privilege that not everyone has a chance to experience.

  10. I know you don’t generally go for awards Caitlin but you bring important things before your blog readers and I want you to know your work is appreciated.
    http://barsetshirediaries.wordpress.com Ding Dong
    xxx Huge Hugs xxx

  11. I don’t think it’s unfair to say that ego can sometimes attach itself to public martyrdom and some ‘cancer diaries’ may fall victim to that. That said, I think anybody can choose how they wish to bow out whether that’s kicking and screaming or quietly drawing the curtains on the outside world.

    Cancer or terminal illnesses are not taboo subjects and if somebody feels it will benefit either them or others to publicly depict their journey in great detail I don’t have a problem with that. The fundamental issue with the sharing of this information is that not everyone wants to know. We are living in a very public age and the notion of privacy has surely been changed irrevocably by the deluge of social media and 24/7 access to a send/post/publish button. Before the explosion of the internet as a social force it is highly unlikely we would have had access to a journal or blog equivalent to Adams’. As you have said, we all come into contact with our own mortality and that of the people we love – we don’t necessarily want to immerse ourselves in someone else’s ‘death story’. But it’s a choice. We don’t have to read it.

    For the New York power couple to have a go at a woman who is already ostensibly ‘down’ is in very dubious taste. Are they suggesting an etiquette for suffering, for dying? One is tasteful, the other is not? Puhlease!

  12. It’s your goddamn life, you can write whatever the hell you want. Anyone who doesn’t like it can go piss up a rope. Who the hell dogs on sick people? That’s so…insecure.

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