Saturday, October 14, 2006

Silenced

I'm sure most of you in the IF world have already read about the hullabaloo on Thalia's blog. For those who haven't, she was basically "outed" by her RE and clinic for having a blog. They have been reading it for a while now, her RE brought it up during an appointment, and apparently are less than pleased by how they are being portrayed. And, in the end, it has silenced her. She has decided to stop posting, indefinitely.

How do I feel about this? It makes me sad-she's an invaluable member of our community. Her posts have gotten me through some tough times. We always seem to cycle around the same time, and I was honored to have such a "cycle buddy". It also makes me angry that a physician could be so unprofessional as to bring up something like that during an appointment (and against the advice of the other staff members, might I add). Perhaps that anger is also a selfish one, because I want her to keep blogging, but I do understand why she's not. She doesn't want to jeopardize her relationship with those doctors and nurses. She also relayed that the way that they found out was that she posted on a message board about her clinic and posting her blog link, which the clinic found and read (and even printed out and showed bits to her RE) and were upset. So, she feels partially to blame, because she left the door open for them to find her.

I still feel that the doctors were extremely unprofessional in even bringing it up. Would they have wanted her to tell them that to their faces? Of course not. If I had my RE tell me that, I'd apologize if what they read was uncomfortable or hurtful, but that they shouldn't take it personally. They're supposed to be professionals, for the love of God. It's not like she was leaking government secrets or research statistics. I'm sure that these people have had a lot worse said to them over the years. But, to bring it up during an appointment? What was the purpose of it? To make her feel badly about it? To have her stop blogging? Well, if that was the desired effect, he certaintly got it.

Thalia's RE told her that he felt it compromised the doctor/patient relationship. This raises numerous questions to me (and I'm sure to other bloggers). How? It only compromises it if the doctors allow it to. It certainly didn't seem that Thalia felt that-she wouldn't be at that clinic if she felt that she wasn't getting the best care, regardless of what she posted. What if she didn't blog, and by word of mouth said the same things? Would the RE be ethically allowed to bring it up with her? Does a doctor have the right to make a patient feel as if they can't express feelings about their care, regardless of how it makes them look in the eyes of others? If that patient went to a therapist and verbalized the same things that Thalia wrote on her blog, would their provider of care have the right to challenge that or express an opinion, should they find out any of that information? No, because the patient is protected by doctor/patient confidentiality. However, I don't think that the same principles apply in the reverse. Doctors are being paid for a service they provide. They must realize that it's competitive (especially IF) and people can choose from a number of providers to care for them. Now, that doesn't mean that patients should make slanderous comments about their doctors (which Thalia did not do, btw), but it does mean that those providers of care need a thicker skin when dealing with their patients, particularly in the specialty of infertility. They are dealing with women hopped up on hormones, who are frightened and unsure of their reproductive future, and are putting their hopes and trust in a complete stranger. How can they not expect us to be snarky or brutally honest when describing what we go through every day? How can they expect us to keep silent?

It also raises the unending debate of how having a public blog doesn't truly protect you, even if you post anonomyously. That we, by giving the public a view of our personal lives, open ourselves to being outed. I certainly took a risk with the Wall Street Journal article last month. So, why did I do it? Because I'm not ashamed of my disease (and yes, I called it that, because that's what it is). People in my "real world" as well as in the blogosphere know what's going on. Yes, it does open me up to people finding out about the blog that I don't want to-family members, work colleagues, but it's a risk that I'm willing to take, because we need the support from those people out there in the world who are going through what we are. We can't talk to our friends or family about our struggles, because they can't empathize. They don't "get it". But here, we don't need to censor or even explain ourselves, because we know that, ultimately, we do empathize and understand it due to the unfortunate fact that we're either going through or have gone through the same thing. I also hope that perhaps my story will resound in someone else's life, and they'll know that they're not alone in what they're feeling and experiencing. Perhaps it will inspire other men and women to share their story, as blogs like Thalia's inspired me to keep writing, even when I had no words.

What would I do if I were in her situation? I don't know. I'd hate to be outed, that's for sure. I'd worry about hurting someone's feelings. I'd wonder if my care from then on in would be compromised due to what I'd written. So, I do understand why she made the decision she did.

But it doesn't negate the fact that she's been silenced. And that's a damn shame.

So Thalia, I love you, I wish you well, that you make it to the "other side" soon, and I hope that your departure is only a slight vacation from us. And we look forward to your words, whenever you decide to return.

8 comments:

Nickie said...

what a crock of shit!

oh, boo hoo, you poor, sad, overpaid, filthy rich RE! You got your feelings hurt. So fucking what! You should be glad to get a blunt insight into what one of your patients is going thru, it COULD help your practice if you let it. Instead, your fragile ego won't allow anyone to say anything negative about you. Insecure much?

I'm sorry that Thalia has been silenced, I hope she gets to go over to the other side very soon and picks up where she left off. I hope we all get to join her too.

Lut C. said...

I'm sad to see her go, but I understand the doctor's sense of unease. They're only human. Perhaps a blog reminds them of that too much?

I know I would not like to be talked about on the internet. When someone gossips about you, you generally don't know, and when you find out you're upset.
A conversation with a counsellor is private.

But I don't think blogging is wrong either.

Thalia said...

What a lovely post, sweetie, thank you so much. A very thoughtful discussion of the issues, much of which I've thought myself. Perhaps at the end of this saga, my docs will have learnt something valuable.

Anonymous said...

Lut C, you are right. It isn't much fun to find a blog that has talked about you (been there, found that). It can hurt a great deal when someone feels that they cannot tell you something to your face, and choose to release the feelings/comments into the blogosphere instead. However, I do feel this is a little different to Thalia's situation. Maybe this is a good reminder that we should think twice before we open our mouths, or hit that 'publish' button...

S said...

I can understand both sides as well, and you're right-physicians are human beings like the rest of us (even if they always don't act like them at times). However, many offices have message boards available to their patients (my RE has one), so they are in essence opening themselves up to criticism.

I still don't think that her RE handled it appropriately though (just my opinion)-especially since the other office staff specifically said not to bring it up, so I feel that, although they may have been upset, they probably understood, to a degree.

*Sigh*-it's just a sucky situation, all around

away2me said...

Our adoption agency did the same thing to us. They were unethical and have left us feeling violated.

I am outraged that her doctor would bring it up. Her RE should be ashamed!

Sassy McSasserson said...

You don't know me, but I just wanted to write you a quick note to say thank you for having a blog. I have spent the past week at work reading all of your posts and I just really appreciate the way you put into words what we are all feeling. I am only 26 and just starting on this infertile journey, but it gives me comfort to know that I am not alone and that there are strong women out there like you who are going through the same types of heartache. Anyway I'm on the other side of the nation but I just wanted to drop you a quick comment.

THANKS!

FrogLegs said...

You know-- her posts got me wondering also. I guess that's why I post almost nothing on what we're doing... but still-- if my doctor wer eto have foudn out- I certainly hope she would be prof. about it. Knowing how hard this was for us. It's not about them-- it's a place for us to hash, get feedback, and have support. I don't kjnwo about you- but I know only 1 person outside of blog/internet land who is also dealing with this. Our blogs link us-- in ways I certainly don't have IRL. Shame on them for putting her in such a spot. I doubt they would have found her if they hadn't been trying so blasted hard.