I’ve been trying to put my finger on the word or phrase to describe the accumulation of common, shared knowledge that comes to a cancer patient participating in one or more social media platforms. I hesitate to use “institutional” when it comes to breast cancer, because it implies the normalcy, the rite-of-passage vibe that surrounds breast cancer, and I hate that—I do not want breast cancer to be thought of as “normal”, as just another step in a woman’s life. It should not be a step for anyone. But institutional knowledge seems the best fit.
There are so many issues worthy of discussion raised by the recent Keller mess. And most of the issues are being written about very well, and hopefully meaningful discussion can happen. But what makes me doubt it is that some of the issues are not really all that new to cancer patients. So, I am re-posting something I wrote a few months ago that is directly related to one aspect of this drama, before the drama even happened.
I know other bloggers have also written about this; I’ve seen such posts, I just cannot remember when or where I read them, so I cannot link them. I can only re-post what I wrote.
The main conceit of Emma Keller’s article is that she raises the question of oversharing via social media, seemingly without looking to see if this issue has been raised in cancer social media before. Does she really think cancer patients have not thought about this, written about this before, that she is the first person to consider this? (Eye roll.) How arrogant are these article commenters that tsk tsk cancer patients with their “if you make your illness public, expect controversy” type of criticisms? Very arrogant. I REPEAT: CANCER PATIENTS HAVE ALREADY THOUGHT ABOUT THIS, YOU ARE NOT TELLING US SOMETHING NEW. But of course the general public does not think cancer patients are able to think of any issues on our own—they must still think we do not research our disease and treatment options, given all the unsolicited advice they feel compelled to give. (Read the first paragraph of this re-post, and also see here for more on that.)
One last thing. It has been implied that cancer patients who share personal items so publicly must think we are immune to criticism because of our cancer, like we think our proverbial cancer cards give us a free pass. That would be an interesting thought—IF what the cancer patients were actually saying was being discussed. But given that not only Bill Keller, but MANY people, so totally and utterly got Adams wrong by calling her the standard bearer for warriors when the complete opposite is true, how can this criticism even be true? One cannot be criticized for something that one absolutely did not do!
Real discussion can only happen if listening (or fully reading everything, not “perusing”) is happening. All I see are people wanting to confirm preconceived notions. If some folks would read and listen to how cancer patients are debating the issue of using social media to discuss such personal matters, maybe they could cure some of their ignorance. Being anyone from an allegedly highly professional journalist to a person who thinks they are smart enough to make a comment does not grant immunity from being called out on the unwillingness to shut up, listen, and learn.
Original post link provided in title, to read comments if the reader cares to do so.
When I recently came across yet another criticism of “unnecessary preventative mastectomy” I reacted angrily. It was on HuffPo, and the article wasn’t even about the preventative mastectomy or the decision to get one so much as the author describing her husband’s reaction, but of course a commenter started in about “unnecessary mastectomy”, thinking all these BRCA folks with their 90% chance of getting cancer just need a little vitamin D. Puhleeze, so tired of this nonsense—does it not occur to anyone that maybe the author did research, already knows and considered whatever tiny-ass piece of advice someone clearly without experience and knowledge—like that particular commenter—could offer? OK, tiny subsidiary rant over.
I am so tired of people judging others’ medical choices. If you don’t like preventative mastectomy, don’t get one. No one, not even other breast cancer patients, let alone anyone else, has any idea of the millions of little details of another’s situation, medical and otherwise, and therefore are never in a position to criticize the choices of others.
But then I think: by sharing her decision (this blogger had previously written about why she’d had the procedure) and writing about it—and by extension, when any of us who put our stories on the internet—are we inviting this judgment? I’m not suggesting anyone stop sharing, not by a long shot. While I’d like to shout at folks like the commenter, “how are any of our choices impacting you—it’s none of your business,” did we make it public business, by, ya know, sharing our business? She put her story out there and she should not expect only bravos and applause, nor should I, nor should anyone. People judge each other all the time, but do we have a reasonable expectation to have them shut their mouths, not share those judgments, when we publicize our choices?
I’m actually not asking a rhetorical question here.
As I consider this most recent fuss that has come into my line of vision, I revisit what makes me write my story and show my pictures. I put my story and my pic here and the complimentary comments are great—I do feel good when I get that support. And it hurt to be told one time in comments on HuffPo that ugly pictures of breast surgery scars should not be posted on the internet (this was during the Facebook kerfuffle).
I certainly am not providing advice about medical choices by sharing my information (see my About page), nor do I assume anyone else’s information or choices will work for me. The more I haunt the internet, the more I think every single case of breast cancer is totally unlike the next. But I like hearing about other options, about other experiences, and other opinions—it helps me think and process my own experience, my questions. For example, I know most breast cancer patients choose reconstruction. In fact, I’m starting to feel like a freak more and more for just going with a lumpectomy. It seems everyone I read on the blogs had at least a mastectomy, usually double. I wanted to show–hey there are other options and that’s ok—we all don’t have to do the same. So I present my choice, how I got there and what happened with it, as just another experience or example, and maybe someone can benefit from knowing about it.
If I inspire, great, if not, great. I’m sure the folks who complained to Facebook about the SCAR project would just accuse me and my posting of my nippleless breast of being some attention seeking exhibitionist. If people think that, I cannot help it. All I know is, it took a long time for me to find images that matched what happened to me (as I’ve mentioned a few times on my blog, I was clumsy at searching cancer issues on the web for a long while). So the more photos of breast surgery examples there are out there for people to find, and if they can help someone else who is just now going through it, then good. I remember how alone I felt, and I remember the relief I got from seeing images similar to mine, when I finally found them. That is why I do it, it is that simple.
I think back to the woman mentioned above who criticized the influx of breast surgery scar photos on the internet, and her comment to me in which she claimed that if she ever got breast cancer she would deal with it with a positive attitude and not post her pictures on the internet. Funny, I once thought I’d never post pictures of myself either. It is impossible to know what you will do in any situation until you are absolutely faced with it. The blogger inspiring this post was indeed BRCA positive. I got the test planning that if it was positive—not realizing how unlikely that would be—I would just get a double mastectomy and be done with it. It wasn’t, obviously, but even now, I don’t know for certain that if I’d gotten a positive result I would’ve gone through with it. I cannot possibly know that unless it actually happened that way. I literally do not know what I would do in any other situation other than the ones I actually faced. If I cannot even know what I’d do with one little situational change—how can anyone have the temerity to call it an unnecessary mastectomy if they’ve never even been close to such a choice? And even if they were close enough—then they should know how awful the choice is, and why not judging others’ decisions is so important.
Ultimately I think it does not matter if the HuffPo blogger, or me, or anyone, posts our story for anyone to read. If I’d just kept the info quiet, restricted to a few IRL people, I would expect none of those people to tell me if they thought I was right or wrong in my choice—I may have shared my business but it’s still not their call. What does it matter if 15 people, or 1500, or a million people know what I did, no one has the right to question my judgment on medical decisions that impact me alone.