Privacy and Blogging … Or: Welcome Back, Fat Doctor!

Last week I was working on a post called “Doctors Who Blog,” and I went to Fat Doctor, my favorite doctor-written blog, and IT WASN”T THERE.

Luckily, I had Fat Doctor’s e-mail, and I shot her off a message asking what had happened. (Apparently I was one of about 300 unhappy readers who did so.)

The short version: Fat Doctor blogs anonymously, but she also didn’t keep her blog a secret, and someone at her workplace went to the boss and outed her and complained about the blog. (And the boss wouldn’t tell her who it was. Argh.)

Read Fat Doctor's explanation of what happened:

True Friendship

Note also that Fat Doctor has a new Web address: http://fatdoctor.org/ and a HIPAA link.

This sounds like spite to me. Maybe because she is such a fabulous writer, and most doctors can’t write a legible prescription, let alone a postcard or a blog post.

(An aside: I’m not just dissing doctors here. I’m a writing teacher, have been for years, and most doctors I’ve met cannot write for a lay audience. The other profession—with the notable exception of John Grisham—is lawyers. Something like 70 percent of lawyers say they wish they had chosen another line of work, they hate being lawyers, and about half of those probably want to be writers. Most of the ones who have come my way as students just don’t have it. They also cool rapidly when I tell them how much the average freelance writer makes, as compared to the average lawyer.)

More on Privacy
When I started writing my blog, I never considered doing so anonymously. After all, I had been writing very personal stories about my life with cancer under my own name for years. (See Jeanne’s Diary.)

However, I have run into a few mud puddles in the road with my blog.

It’s hard to explain, but I’ll try. I am a very public cancer patient on my blog and in my other writing. Almost a Professional Cancer Patient, you could say. I do radio, TV, and magazine interviews when asked.

But in my private life, I keep the shields up. I’ve learned over the past eight-plus years that I need to do this to protect myself and to keep my life as normal as possible.

So there are a lot of people who know me slightly—like the folks at the grocery store, people at First Place where I volunteer, and members of my dragon boating team (NOT a cancer team), who do not know that I have cancer.

And that’s the way that I like it.

When acquaintances, or even friends, who know I have cancer, ask me how I’m doing (You know: “How aaare you?” …with the big sad eyes), I just say fine, and ask how they are. Most people don’t push.

I only talk to my closest friends (and the readers of my blog) about what is really going on.

The problem with the blog is that people who know me but are not close friends are reading it and then making assumptions about how I’m doing. And acting on those assumptions.

A group of my former students decided to send me a gift certificate for a couple of meals from a professional chef, because one of them read some of my posts about meltdowns. Sweet, but embarrassing. I have a professional relationship with these folks. I don’t want them reading about my meltdowns.

And one of the women in my writer’s workshop heard I wasn’t doing well and sent me an e-mail saying that she guessed I was canceling the workshop that week. (!?!?!?)

The reality is, my blog is not written for these folks, who don’t have cancer. But I haven’t quite gotten to the point of asking them not to read it. Maybe I should.

There are also the folks who know me who read the blog and then send me advice—a real hot button for me. When I want advice, I ask for it. When I don’t ask, I don’t want it. Pretty simple.

I’m thinking of sending these folks e-mail that says, "My blog is not for you, please don't read it."

My audience is people with cancer, near and far.

Liz’s Words of Wisdom
I e-mailed Liz, who blogs anonymously, and asked her about the privacy thing. Here is her reply:

When I first started my blog it was just for a few close friends and family, since I was tired of attaching jpgs to mass e-mails. But somehow word got out, and before long I got "discovered." Two of my former employers in California published public links to my blog, without my permission, using my full name, which I'd never used on the blog, and suddenly I was overrun with former clients, readers, co-workers, distant acquaintances, all who know exactly who I am.

Gah! It really gave me the creeps and also affected and inhibited my ability to write freely and personally, not to mention the profanity issue. And what after all is cancer without profanity?

But after giving it lots of thought, I decided to just keep going the best I could in spite of them, because: a.) writing and having witnesses is therapeutic for ME; b) it helps me keep a running record of what happened and what I looked like as it happened; and c.) every day several dozen people stumble on the blog via search engines looking for cancer-related information. And maybe, just maybe, a brutally honest and deeply personal account of hell peppered with random profanity will be helpful to them in some small way. I try to write things I wish I could have read when I was going into it.

And then there’s the brainhell blog, also anonymous, but I couldn't get it to open right now.
Here's the URL: http://www.brainhell.com/

Liz reminded me that Brainhell has a "blog etiquette" link in his sidebar, where he asks people--friends and relatives--who know him in the real world and stumble on his blog to send him an e-mail and let him know that they have read it. I think he also makes it pretty clear that friends and family are NOT his audience.

Comments, please: If you are a cancer blogger, please add a comment telling me if you blog anonymously or not, and why or why not.

Also: Who reads YOUR blog? And do you (secretly) wish they would stop?

Thanks.

@ Jeanne Sather 2007.

Comments

[Fat Doctor]

Interesting. Having just given birth to a new blog, I want everyone to read it. But check with me in two months and I'll be whining about people I've told...it's a never-ending catch22.

[Jeanne]

I agree: It is a catch22. I'm still trying to build readership for my blog as well, and I feel that same push-pull ...

So glad you got your blog back up though. And hope things go OK at work.

Jeanne

[Teri]

Thanks for touching on the privacy while blogging puzzle, Jeanne. I was just asked by our university's public affairs office if they could add a link to it on the medical center's list of blogs. I said yes, but they might want to read it first, knowing what it now says about meltdowns and rude students. I don't know if they did or not, but I reserve the right to continue to blog what I am going through. Knowing that it could get me in hot water like it did Fat Doctor may change my mind about giving them permission to link to it (because you KNOW who will get the ax if something turns up that isn't favorable to the center).

[Teri]

Dang it - the university was asking to link to my Cheeky Librarian blog. Just clarifying. -Teri

[Jeanne]

Teri--thanks for weighing in.

I think my blog contributed to my problems with my former oncologist. Not sure she ever read it, but I think the fact that I was writing a blog called The Assertive Cancer Patient rubbed her the wrong way.

Just put up a post about snappy comebacks.

Jeanne

[Jill]

I blog too but it's more for family and friends as a way to let them kno what it's REALLY like to live with cancer. No more pretending! If they want the unvarnished truth, they can read my blog. I include a link in my email signature to http://www.jillscancerjourney.blogspot.com.

I have received a couple of messages from random people who found my blog, but I haven't been "discovered" yet. I think I'm prepared for if/when I get stopped by strangers in the street. In the meantime, I hope I am serving those who care about me and others living with cancer by writing the truth about living with mets.

[Jeanne]

A comment from one of my writing workshop participants, and a blogger, that came in via e-mail.

"Very interesting! It's a fine line. For me, it's like letting people read my
diary. I want to share what I've written, but I don't really want people to
discuss the content with me in 'public,' if that makes any sense.

"Your work is a little different. You give such an authentic voice to what
it's like to live with cancer. I know your audience is people who share that
experience, but I think it's important for people who don't have cancer to
know what that experience is like as well. Especially caregivers. Of course,
then you run the risk of people reading too much into what is just a
meltdown and making assumptions!"

I think she put that very well: Just because I've allowed people to read my "diary" doesn't mean I want to discuss it with them ... an interesting dilemma.

Jeanne

[Sara]

Well, since you asked...

My blog has become something other than what I planned. Initially it was just supposed to be a resource for amputees and the people in their lives, a link to other resources, a compendium of stupid little work-arounds I've invented or picked up for the unique complications I've encountered, etc., all with the hope that other amputees would contribute. It wasn't even about cancer, really, except to say that that's how I became an amputee. It was not necessary for anyone to know anything about me, and could even prove detrimental, I thought, if the site became too much about me. Also, there is a specific stripe of freak who is attracted to amputation as erotic or as a lifestyle, and though saying so may make me a lesser person in the eyes of strangers, I have absolutely zero compassion or tolerance for these freaks, don't want to talk to them, and have said as much repeatedly from the outset. I block them when they post at my site. I also don't want any following me home. So for the first year and a half, though I have always used my real first name, I worried very much about how much of my real life to reveal.

Then I started reading blogs by disabled feminists and feminists with cancer. One of the things I realized through reading these blogs was that a lot of the crap I deal with not just as an amputee but as a specifically female amputee occurs because amputees and especially female amputees are not very visible in real life for many very complicated reasons, including (but certainly not limited to) a kind of personal shame AND fear of having to interact with the public about our amputations, which makes us try to hide our amputations, and which shame and fear are completely understandable since, seeing as how we are so exotic a segment of society, most people don't know what to think of us or how to act around us. I realized that my experiences that have most sucked as a cancer patient are the kind of experiences that can only be fought by repeatedly talking about them, over and over, to whoever will listen, but that not enough people ever talk about stuff like this in part because it is exhausting, in part they feel powerless and are honestly and justifiably terrified of repercussions, and in another part because nobody in the world of cancer wants to be seen as "negative" (and these are just three out of many, many parts). There's even a sphere of magical thinkers who are terrified to hear or admit negative thoughts because literally they think that if they do they will die. But they keep having negative thoughts, feelings, and experiences because (a) cancer sucks, (b) our healthcare system sucks, even if you have insurance, and (c) by and large, people in our culture do not know how to act around sick people, partly because we're all supposed to be pretty and happy all the time, especially the women.

And meanwhile, our media has presented cancer patients as either Brave Survivors Who've Licked It or Poor Tragic Sufferers. And I'm not either of those things, and I'm sick of being expected to behave like either of those things.

I think of all this and I think of the image of a snake making a circle where she bites her own tale to complete it. And there's a whole blog post I've been mulling over about the places female amputees, real and imagined, *are* visible, so I won't go into that here. However, I realized that the one tiny fragment of a solution I could effect was to reveal myself as a real, functional, fully rounded, troubled, productive, laughing, gardening, cancerous, creative, and not the slightest bit exotic person. So I turned my blog from one about how to accomplish everyday tasks without one or more of one's original limbs into one about how *I* live my whole life, including the gardening, the cooking, the painting, the jewelry making, the dead pets, the astonishingly wonderful boyfriend who doesn't always think I'm wonderful, and, oh, incidentally, here's how I clean my bathroom floor with one leg, and here's how I get into the bathtub with one leg, and here's what I do about sweat on the stump in my socket, and this is the decades-long medical and administrative clusterf*ck that led to my giving up one leg to cancer, and this is how I feel about all of that, and how 'bout you; do you have anything to add?

This means pictures. This means talking about where I live, where I used to work, and real adventures I embark upon now, including what I'm trying to do for a living. This means not being mysterious or secretive at all.

I don't have kids. I don't have a job that can be compromised by me shooting my mouth off, and I do not tell other people's secrets. Also, I'm not young and hot, and the more I do reveal of myself, the more obvious that becomes and the less likely it is that I will attract one of those freaks. So it's easy for me to make this choice, relatively. Plus, now when people bug me in person, I can just send them to my blog to find out all about whatever it is they're asking.

I just don't tell anybody my actual address or my last name. But I don't use my last name professionally, either.

I need other amputees, especially new amputees, to know that their lives aren't over just because of the limb loss. I need other cancer patients to say "no" to bad treatment, and to hear what bad treatment is so that they can have the courage to do so. I need people not to freak out when they see me. I think a lot of people share my needs.

So I have become someone who reveals honestly as much of my real life to whoever happens by my blog as I practically can (time being a far bigger issue for me than privacy; I am not a professional cancer patient, but a professional artist who happens to have cancer). I see others doing this, too, yourself included, and I can't help but cheer you on. I know you all reveal whatever you safely can, and that it's different for each of us because of the circumstances of our unique lives. I also think doing it all these different ways just serves to underscore one of the main points of doing it at all, to prove that we are not, as one disability/cancer blogger put it, a "monolith," but individuals, and that this is as it should be, and that this is the only way we should be seen, and treated, and approached, as individual humans who are all normal even while we are all unique.

[Cancer Bitch]

I have mixed feelings. I'm a writer w/ two books from university presses, somewhat known in the city where I live. I also teach (non-tenured) at a university. My blog started out anonymous. I don't use my name, but I've added pictures. I don't give the real names of the university or hospital. BUT now I'm on the radio once a week, so I'm fairly public, and I've contacted some agents about turning the blog into a book, and they mostly say that there are too many cancer memoirs out there. Most of my writing life my work has been non-mainstream, and now my work is being considered too ordinary. So this whole marketing thing is corrupting my work, I think. Do I want to make my blog more Jewish? More bitchy? More literary? and thus differentiate the potential book from other memoirs? I shouldn't even be thinking of those things. I should just write. The weird thing is, too, that I've given out the URL to cousins, and so there are things I don't want to say about my family, things that would be OK for strangers to know. How to get this all out w/o EGO coming into play. The cancer has energized my writing. I hate admitting that. I've changed a few identifying characteristics, so that medical personnel are disguised, a little. Right now my mastectomy stitches are starting to itch, after three months. I don't care if my students know that, but I don't want the university president to know, necessarily.

[Lisa]

When I started my blog it was primarily to keep my friends and family up to date on what was going on etc. I thought of it as a way to have to avoid having 10 conversations a day about what I was going through. I worried about trying to keep it anonymous and have never used my last name, but certainly it is personal because taking a journey through cancerland is always personal. I am always surprised to find out who is reading and who isn't, but mostly the response has been positive. When I go back to work I will have to walk this line more carefully because as a physician I really don't want my patients families (as my patients are all babies) to be able to read it. I have no idea how to avoid that though other than keeping my last name out of it. I think the fact that my blog title and URL are different helps because it isn't so easy to search my blog. Fortunately for me I have a little while before I have to worry about that.

[Michele]

My blog is anonymous and not anonymous at the same time. It is also not just about cancer, but about the other aspects of my life too. My family and friends read it (and cancer survivors from a listserve I am on, mom friends from another listserve and strangers from other people's blog links etc.) but I don't use my husband or daughter's names, my last name or identifying photographs (and I moderate the comments so I can be sure that others don't use their names). The content is not always quite so anonymous, like I have mentioned the names of hospitals I go to but not drs. names. My reasons for doing these things are mainly to protect my young daughter. I initially kept it secret from my parents and other family, but with a recent recurrence I let them know so they had a place to check in on what was going on with me. It does cause me to write less freely knowing my parents are reading it but on the other hand they have gotten a better understanding of what I am going through by reading it.

[Jeanne]

Wow--thanks for the great comments, everyone. Lots to think about, and obviously no right answers here, not even for any one blogger--the answers are going to change over time, and with what is going on in our lives and any given moment.

[babybaby]

I haven't had time to read all the other comments, but I think the theme of limiting the audience is pretty strong. for me, my blog started out as a conception blog, so I wanted to keep my plans private (people can be so invasive with their questions about fertility!), then it became an IVF blog (even more so!) and then a cancer blog. and because even (especially!) my husband doesn't know I have it, I feel able to say anything - mean thoughts, miserable thoughts, the secret things that women with cancer aren't supposed to think. for instance, I found Assertive Patient by searching on "mastectomy sex" - not something you want your father in law reading about on your blog, right?

I had - have - a blog under my own name and when workmates started reading it I cooled right off. these were people I wanted to keep a certain distance from.

if my blog was outed, I'd be distraught. I have said unpleasant things about my husband's family in there (and everyone thinks these things sometime, I just need to write things down), I have complained about very personal parts of my marriage, I have said things about mothering that, while not negative, are intensely private. if I thought my friends were reading it, I'd delete the whole thing, and lose six years of history.

so maybe it's my private personality, or maybe it's a more general thing about the right to think aloud in one's own space without having to modify the thoughts to suit an audience. I took a long time to even allow comments on my blog, for similar reasons.

be interested to see what else you come up with on this, Jeanne