Yes, I know, not quite the post you were expecting, but something has happened which I need to blog about before going through the details of the consultation yesterday (answer, yes you are now a patient with poor prognosis, no we don't think you need to give up yet, decision probably a frozen cycle in November after a month of zoladex, because they won't let me do another fresh cycle before Christmas because my ovaries won't have recovered enough by November, and they close over Christmas).
It turns out that my doctors have found my blog. That they found it is my fault, because I posted a link to my blog from a message board site that is just about the clinic, when I was trying to dispose of my drugs. So that made the connection, I don't think it's possible to connect the two otherwise, although stupidly I have told Dr Candour that I blog in a couple of previous discussions. Ironically, I didn't even know about that message board until Dr Candour told me about it. *sigh*. I've asked the moderator of the board to delete my profile and all posts so that this doesn't happen again, but of course the words "bolted", "horse" and "stable" come to mind. I'm not sure what to do next, as of course now the privacy of this site has been violated and the whole point of having a pseudonym and not telling anyone in real life about the blog is partially gone. At least it wasn't my family who found it, and I still think it's incredibly unlikely that they ever would. They don't read blogs or message boards,Thalia isn't my real name, and I've never used the real names of anyone I mention. Nor does anyone in my family know that I even have a blog.
I was very upset when Dr Candour told us this. I was upset initially just because he told me how upset the doctors are about what they read. Apparently they printed out some bits and showed it to him. I can see how I might have upset several people if they read stuff I'd written about them here. I feel terrible that I have upset some people I respect, and some people I really like and appreciate tremendously, because I wrote something thoughtless, sarcastic, unkind and unfair. Some of the stuff is exaggerated for effect, or just plan snarky. Some of the stuff is pretty accurate, but I'm sure still would hurt my feelings if I read it about myself. Some of those doctors do have things I think they could do better - I don't rescind any of the comments about how unhelpful they can be sometimes when you ask for details about what's going on, for example - but the way to give them this feedback was not for them to read it in the middle of a post about my appointment that day. Indeed after the crappy IUI experience I wrote a long letter of feedback to Dr Candour, which I thought he took appropriately seriously - certainly things like them telling me test results got better after that. Equally when we've had good experiences I've been very careful to tell Dr Candour about that, too, as it feels only fair. So I have given feedback through conventional channels when I've been able. My concern is that the doctor who is most upset is my favourite doctor, who I've mostly written good things about, but also some snarky things that I totally see would upset me if I read them about myself. Those things don't represent the total of what I feel about our interactions, but they are out there, nonetheless.
Of course some of what I wrote is unfair and unkind, it is totally slanted by the mood I was in that day, what was happening with my cycle, and my need to occasionally write something a bit snarky to vent all the misery that is infertility, as well as to entertain you. I'm an unreliable narrator of my own life, just as everyone is. I'm sure my husband would not recall the details of some of the discussions I've reported on here in the same way that I reported them, and I'm sure he would be terribly hurt by some of what I've written about his ED. Similarly I'm sure the way I write about a particular wanding appointment is not the same as the memory of the person who did the wanding. That's the point of the blog - it's personal, it's mine, and it's whatever I want to write. The so-called anonymity of blogworld meant that I have - or had - no obligation to be kind to the people in my life in what I wrote about them here, despite what they deserve. That's why I started a new blog when I started writing about infertility, as my old one was known about by a couple of my friends. I cringe to think what my sister-in-law would feel if she ever read on here about how I felt about her pregnancy, or how I feel about my littlest nephew, born 10 months after our wedding. I love my sister-in-law a great deal, and I've also said that here, but I bet if she read it it would be the thoughtless, unkind things that would stick with her. The things that I think but would never say in real life. And in many people's real lives, there would be no need to ever write that stuff down. But I've had the worst two years of my life in the last two years, and the way I have dealt with it is to find a place where I could sometimes be my worst self with no fear of causing hurt to the people I love, most especially my husband, who knows about this site but doesn't read it because he knows that I need to be able to write stuff without the fear of how he would feel if he read it.
So, having had a chance to think more about this, I'm not just upset because I have upset people I care about and respect tremendously, but also because I feel violated. It's like someone went through my private journal. I know it's not like that - I put this stuff out on the internet, there was always a chance that someone I knew in real life would find it, and I'm being very unfair expecting to have the upside of the public side of this blog without any of the concomitant downside - but that's how it feels. I don't know what to do now, as my ability to write about what's happening with the clinic feels tremendously compromised. I could go password protected, but then all the effort I go to to learn about the science and share that with you guys has limited utility, and the chance of some new person finding this and being able to benefit from zoladex, for example, is also limited. I could start up again with a new identity and reform my links to this community, but that feels odd - I have good relationships, albeit electronic ones, with some of you already, and I don't really want to start building this community from scratch again. Or I could have a second blog which is password protected, where I write about the stuff I don't want the clinic to read...no, that just seems awkward.
I'm also upset because it's knocked Dr Candour onto a somewhat lower pedestal. I'm not sure why he raised it with me at all. Think about it - situation before he raised it, several upset doctors. Situation after he raised it, several upset doctors plus a very upset me and an angry H. I can't take back what I've already written. He didn't want me to raise it with the doctors directly so that I could apologise (I'm going to ignore that). He raised it, he said, because it affected the nature of the doctor/patient relationship. Of course it wouldn't change how they treated me, he assured me.
On reflection, that statement confuses me. How does it change the nature of the doctor/patient relationship? Because they now know what's going on in my head while they're wanding me? Because they know that I think about them as real human beings, with strengths and weaknesses like the rest of us, rather than impersonal doctors, rather better than the rest of us? Because they know rather more about my life than they'd like to? On that one, well, that's really not my problem, I didn't ask them to read the blog! Because they now know I can be mean and nasty in an unjustified and uncalled for way, and that will affect how they feel about me at the clinic? But that would mean it would make a difference to our treatment, and he said that it wouldn't...
So I'm a bit confused. I know the doctors asked him NOT to raise it with me, but he went ahead anyway, so he must have a good reason. I'm going to have to write to him to clear this up, to understand what he wants me to do differently. Probably he'd rather I didn't blog at all, although I'm sure he won't say that as I'm sure he'll feel it's not really up to him.
In deciding what I do next I need to work through why I blog in the first place.
I blog because it is impossible to share how awful this experience is with anyone in real life. I do have a colleague at work with endo so bad she decided against IVF and is adopting from China. I do share a lot with her, but not to the extent of detailing wanding experiences or egg collection stories - she's not interested in those details. Yet those details are important parts of how those of us online build intimacy and understanding with each other - not to mention sharing coping strategies. So I blog because you understand me in a way that no one in real life ever can, except possibly H, because you know the pain and you know the indignity and you know the stress and the complexity of what we are experiencing. And I'm glad I don't have to inflict that on people in real life. They don't get it, and I wouldn't have as rewarding an experience sharing with them. I blog because I don't see how I would have got through the last two years without the support that you offer. I blog because I've got to get out all the shit that is in my head, or it would drive me mad. I blog because perhaps my life as I wanted it to be is going to end, and I have to have a way to process that, and your perspective on my processing helps me see things more clearly. I blog because it's good for me to get stuff out there rather than sitting and fretting. And sometimes, but perhaps infrequently, I blog because I want to help someone else not have to relearn the stuff I've already struggled to learn. So yes, most of why I blog is about me. It's mostly selfish, and mostly very very subjective. It's not about concern for my family, although I feel a lot of concern for them. It's not about my love for my husband, although sometimes that comes through. It's not about a fair and accurate portrayal of my doctors, although it is sometimes about my experience of working with them.
It never should have gone further than that, and oh how I regret that it has. I regret it because I upset people I respect. I regret it because for me it has taken the shine off a doctor who I think is tremendous in many ways. I regret it because this no longer feels like a safe space for me.
Having worked through all of this, I think in the end I will be able to keep blogging as I have done with just a few changes. I will probably limit the snarky comments about the doctors and nurses, but I won't - I can't - promise to never say anything unfair again. Sometimes my experience is different than yours, and on here it's my experience that counts. But if the people at the clinic want to read this, then they need to understand that it's not meant to be fair or kind, or even respectful, it's meant to be helpful to me. Although maybe I'm kidding myself. The thought of writing something like: "Dr Gorgeous's earrings were so pronounced today that I was worried they were going to dip into the ultrasound gel," knowing that she was going to read it, is fairly horrific (and NO I've never written that, nor experienced it, so don't go getting upset about it).
I am not going to make any decisions while I'm still so upset.I'll think about it more over the weekend. I'm turning comments off as I don't want you guys to write things in the comments that would upset the doctors if they are still reading. If you want to discuss this, please email me - the link is on the top left.