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Thursday, August 24, 2006

In or Out

As the Infertile Crusader (with my knee-high black boots and a micro-suede cape with a big letter "I" embroidered on it), I may seem like the most "out" Stirrup Queen in the world. But that was not always the case. Follow me back to a simplier time. When no one knew details about my cervical mucous or progesterone levels.

(Climbs into her way-back machine and pats the seat to indicate that you should join her. Everything gets fuzzy and when the world becomes clear again, you are sitting in a hospital waiting room watching a hysterical woman bawling as she waits to be seen.)

Early on in the trying-to-conceive process I told three people (four if you count my husband's grandfather) that we were trying because I wanted moral support. A few months into the process and trying-to-conceive is all I thought about day and night. And I needed an outlet to talk about it or I would burst. And I needed to ask questions to make sure I was doing everything right because...you know...we've all had those doubts. The am-I-having-sex-correctly doubts. The how-long-does-the-semen-need-to-stay-in-there doubts.

Once we started thinking that there may be a problem, I told a few more people--those who I knew had already tried treatments or who had an RE to recommend. But I was still pretty discreet about who I told. It was on a need-to-know basis as in I need to talk about it so you need to know.

One weekend we were going up to see my husband's grandfather. We were fairly certain that it was nearing the end of his life and my husband wanted to be there with him. Though I had gotten many negative pee sticks, I was currently 21dpo and it was my first time taking progesterone. I felt ill during the 3 hour drive up to see his grandfather--horrible rolling cramps. I took 4 alleve during the car ride. I think y'all see where this is heading.

When we got there, I passed clots and what looked like it may be tissue to the home health care worker who was there for his grandfather. We called my doctor who coldly told me that there was nothing to do about this because it was probably just (just!) a chemical pregnancy since I was only 5 weeks along. She said the only thing I could do would be to go to the hospital.

So we went to the hospital. And it was a chemical pregnancy. And I was heartbroken. My doctor had suspected that I had been having chemical pregnancies before this point--no positive pee sticks (and no betas yet because I rarely had a beta prior to seeing the RE) yet cycles that went past 18 dpo with an extremely heavy period at the end. But this was the first time that I had actually known what was happening. And since we had discovered my progesterone problems the month before, it felt like it was all my fault. Ha--little did I know that I would have crappy eggs and high FSH too! And here I was worried about a little luteal phase defect problem.

We had told my MIL before we left for the hospital what was happening. I mean, we needed to explain why we were turning around and heading right back out of the apartment during a time when we should have been staying with his grandfather (and believe me, I still feel guilty about this). But even though few other people were there at the time, she got on the phone and told some family and friends why we were at the hospital. And suddenly I was sharing our trying-to-conceive (or...more accurately...our trying-to-conceive-and-not-being-able) experience with many people. Some of whom were related to me and some of whom I didn't know well at all. It was an extremely awkward funeral when people wanted to keep talking to me about it and it was the last thing I wanted to discuss with anyone who wasn't either my husband or a close friend.

Which brings us to the question of in or out. And how we decide. And how sometimes it is decided for us. There are those who can say, "well, what's the big deal. You were out to other people." I certainly was out on the Resolve bulletin boards. And to a small circle of friends. And to selected family members. But those were all my choices. This was the first time that the choice was taken away from me.

And for someone who talks a good game right now about not being afraid to talk about my infertility, it is a very different story on the inside. This is the truth--I'm not shy to talk about it if I think that the information is going to either teach someone something about infertility or connect to another person in the community. But who wants to stand on a chair and scream out to people they have to see face-to-face, "hey, everyone, I'm completely defective. I have low progesterone and crappy eggs and high FSH and our infertility is entirely my fault." It is very different to post something in a chat room vs. look at your brother-in-law and know that he knows that the reason you don't have kids yet is your fault.

And my husband kicks my ass whenever I talk about fault. But that's how I feel. It's my body. It may be out of my control, but it still feels like my fault.

And maybe I was so upset by the outing because it was someone else taking liberties with my personal information without asking me. She may have felt like it was necessary to call her friends and tell them, but the reality is that many excuses for our absense could have been made--such as Mel's in the hospital with food poisoning--without sharing what was at that point a very private thing. It was my baby. And it was my uterus. And it was my sucky low progesterone. And I didn't want to share any of those things with anyone at that time. Because it was so raw and so terrible and so sad. And I felt a lot of guilt--the timing of it, the fault--and it became this blaring sign over my head--the infertile one. When she told people who didn't know me very well about my infertility, that became my label. As opposed to the people I was choosing to tell who knew me quite well and infertility became one more aspect of my existance.

It's such an interesting debate--being in or out or partially out--because everyone has a different threshold (and where are you?). I started thinking about this last week when I read someone else's blog about how they had been outed and I started thinking about my outing (and after that outing, I was fairly open to speaking about it, but always somewhat bitter because it hadn't been my choice to put that information out there. It was only my choice to continue or not continue the discussion). And how it changes a relationship. You can't unring a bell. Once those words are out there, those words are out there. And what may not bother you for others to know may be a source of huge discomfort for another person.

It has made me become more careful. More circumspect. It's not my place to spread along personal information such as health issues, infertility or mental illness to people who may need to interact with the person without them knowing (except in the context of marriage where I expect that if I tell Jane about my infertility, she will tell her husband, Dick, and I'm fine with that). It seems hypocritical to an Infertile Crusader who is trying to leap tall buildings in a single bound as she attempts to remove the stigma from infertility. But in that scenario, I'm doing the leaping over the building and in an "outing", someone else is catapulting me.

18 comments:

C said...

We were pretty open about TTC to begin with. My DH really wanted to tell our families that we were trying, and even though I wasn't completely comfortable with it, I agreed because he so rarely feels that strongly about anything.

So we told our parents, who thankfully respected our request to keep the information private and not to ask us about how things were going. And then we didn't get pregnant. Finally, after 10 months I told my mom that we were starting fertility testing and shared my blog address with her, my dad, and my sister so they could keep up with what was happening even when I didn't want to talk to them directly about it.

Like Mel, I'm very "out" online, and with a select group of real life friends. Lately I've been struggling to decide if I should widen that circle to include extended family members who ask when we're going to start our family. Where do a draw the line and decide that sharing is more trouble than it's worth?

When it comes down to it, I need to know that the people in my life who are aware of our situation won't bug me about it. They'll be supportive without being overbearing, and will respect our privacy when we don't want to talk about infertility. Not everyone I would like to share our struggles with would do those things.

At some point I expect to be fully "out" with everyone in my life. After we get preganant or adopt. After infertility doesn't define my life and my future anymore. Right now these feelings are too raw for me to be out with anyone I don't completely trust.

KE said...

I was just thinking about this earlier. When we started TTC, I told only my sister. Eventually we told our parents. So when we started the infertility testing, we told them about that, too. I also told a few close friends along the way.

I recently told my MIL that she could tell the people she thought needed to know - mainly my SIL's and their spouses and a few close family members. I did this to stop the "when are you going to have kids" questions. That's helped a lot. There's nothing like being asked that for the zillionth time when you're on CD1.

I think I would be more open about IF if we weren't dealing with MFI. My husband is very sensitive about this. Most people assume it's the woman's "fault" when a couple can't conceive, and he doesn't want me to have to correct them or let them assume it's me. And I respect that - I don't know how I'd feel if it were something with me, and I also want him to maintain his privacy.

I continue to be open online and with the people who are closest to me. I feel like it's a huge relief to be able to talk to people. If/when we move on to IVF, I expect more people will know. Like so many things about IF, my feelings seem to change almost every day.

Dee said...

My husband and I were very quiet about our IF. Well, I should say, I was very quiet about it and my husband respected my wishes to keep it between us. We did tell one person, my MIL, because she is one of the most understanding, compassionate people I've ever had the pleasure to know. She didn't pry or question, she just was, if that makes any sense.

Along the way, we got many of the "when are you going to have kids?" questions and my pain was so raw and deep that I would typically respond that "I didn't know if I wanted kids" or "I don't want kids." That would shut them up quickly. But it was a lie, and I felt so bitter and ugly saying it. Having a child was what I wanted more than anything else but it hurt too much to admit that to anyone out loud.

After a while, we did share some limited info on our issues with our closest four friends (two couples) so they would stop asking us and would also better understand why sometimes I wasn't able to say yes to attending their children's birthday parties or other such get-togethers.

We eventually had our daughter after four years of treatment. Now, we're expecting #2. When we told our family the news, my MIL said she had recently had a dream that we were expecting again. When I asked her why she never told us this, she replied, "well, you always said you didn't want children so I assumed you were done after having one."

Huh...after several years, my little white lie came back to bite me, be it ever so slightly. It stung for just a second but then I remembered that I had just done/said what I could to survive, to get through the most difficult struggle of my life, and on my terms. I think it was the one modicum of control I had in an otherwise uncontrollable situation.

Southern Comfortable said...

I guess I'm just generally "out" with friends and family. Everyone knew that D and I wanted to have a family right away. (We even had friends placing bets on how quickly we'd have a baby. Ha! I wonder who "won" that one.) I just didn't feel like keeping it a big secret. I keep things more general or specific depending on the audience ("We've been trying for a while and are having some problems" for a friendly co-worker who asks when we're having kids, to "Yeah, I had my first date with the cooter cam" to my best girlfriends or D's close friend who went through IF herself).

There are occasions when I've wished I played it a little closer to the vest, but it's always been me doing the telling. No one has "outed" me without my consent.

Kir said...

well given that I was 33 and my dh was 36 when we married, (I am also his 2nd wife, there were no children the first time) no one really expected us not to start trying immediately. I also was very up front at our wedding(loud and smiling telling everyone who would listen) that I wanted to be PG by Christmas (It was late August) . Um it's 3 years later.

However, I was always OUT by my own volition. I talked to family and to people in Wal Mart. Many times it was to beat them to the punch of "when are you two going to start trying" , I unlit the flame before they struck the match.

This is what was comfortable, I admit that I didn't want to be seen as a failire, so if I could explain what was going on, what I was doing by being proactive, then I "could be successful" just maybe later.

John was ok with it too, in the beginning he was shy with it (but he's shy by nature) and now he is open about it too if someone asks. We work at the same company, have other family members here and just don't see the point in trying to keep it a secret (we tried that when we were dating and it did more harm than good with hurt feelings and rumors) so it's just easier to share. One could accuse me of being a big mouth and they'd be right. Yet this is something that (for me) feels better when I can talk about it. Get it out of me and for a small second it stops racing around my head like a gerbil on speed.
Plus with family, I just ask for the prayers, and with the knowledge that we were trying, came the prayer cards, the water from Lourdes, the oil from St Ann's and all the people that those people told...praying and thinking good thoughts for us. Hey if it takes a village to make a Piccinibaby, then so be it.

I'm IF and no matter how much that hurts, that's who I am right now and I share that pain with others, so that for me t's less.

Plus if we get PG, look at how many people would have been invovled in on way or another. My own village :)

Anonymous said...

I started thinking about this quite early on in my IF career (after reading Tertia's post and the comments about being in or out).

Like you, I have no problem being "out" to people who need information or support, which includes people online. But my family (except one cousin) is not aware that we have done ART, and only a handful of friends know.

In part we keep quiet because we think that if people knew they would be more likely to think that our adopted children were second best (if that makes sense). In part, it was just to spare myself having to tell people again and again that we'd failed another cycle. It was just too reminiscent of people calling to ask "so how's the the baby" after my son died.

Love the boots and cape, BTW.

Anonymous said...

It's strange how ,at times, things come to you right when you need them to. This post is somewhat like that. It appears that my husband and I are starting a new journey in our marriage together-- one that may include infertility issues. And I'm struggling with who to tell and how to tell them.

What do I say--
"We're trying and it's not working"

"DH is going to have some tests done and have a consultation with a specialist"

"I'm so incredibly scared by this whole thing that if you talk to me too much about 'when am I going to get pregnant?' I just might scream 'NEVER... we might NEVER get pregnant!'

So how do I begin? Should I wait until we know more? Until the test results are all in? Until they are wheeling DH into surgery? Do I wait to know before I tell or do I share each step of the way?

I just don't know. So for now, we are most definitely IN.

ellie said...

I am pretty out - online, and with close friends and family. Most everyone has been great but we did have to go through a learning curve with everyone learning the resolve web site and what not to say :)

I could say I am in with strangers and not close friends- I have a woman who I see for leg waxing- she has a small daughter and asks when we are having kids pretty much every time she sees me. At first I said it just hasn't happened yet- and now 2 years later- I just don't go anymore. I could proably say something and she may or may not get it-but I just don't think I have it in me to do the learning curve all over again with people I have so much less invested in. I'd like to be a stronger person and be able to educate more people about it- emotionally I just don't think I can right now.

Anonymous said...

I jumped right out on my own pretty early on. My mom always knew that we were TTC, and we never considered keeping that information from anybody (we picked out baby names while he was deployed before the wedding).

We got pregnant on the first anniversary of trying, only to be not pregnant a week and a half later (chemical pregnancy, early miscarriage, whichever you want to call it, there's no difference in my eyes). After we lost the baby, we came way out (as in broke the door off it's hinges and jumped through the opening in sequin doctor's-office paper gowns), and we finally came out to his son when I went in for my laparoscopy 6 months later. I'm out to complete strangers now, anybody who wants to listen.

My husband isn't actively out, but he does have a few people that he trusts that he talks to about it. His mother dealt with secondary infertility due to frequent infections after he was born, so she has been amazingly supportive. And if anybody asks, he does offer up the information. He's never done anything to stay in, but he doesn't do anything to come out either. He's pretty much in the doorway and leans to whichever side the people he talks to expect him to be on.

seattlegal said...

I talk about it with almost anyone who is willing to listen (and probably sometimes with those that aren't). I want people to know because, I guess, I just want some sympathy. I think that's the reason why I feel the need to share it with everyone.

My husband, on the other hand, doesn't like to talk about it. He recently has become more open about it with his family, but for a while, they had no idea what was going on with us. He still doesn't like to talk about it though. He gets really uncomfortable with it.

DI_Dad said...

I believe when we were TTC we were about as OUT as you can be. Friends, family, neighbors, co-workers. In our case it was because we doing a bit of lobbying trying to ge the NYS insurance laws changed to mandate infertility treatments (they were changed but have caps).

As far as being OUT re DI most of our close friends know, limited #s of family and co-workers. A USA Today story certainly outed us to many more folks and occasionally people we already know. Its fun when a distant cousin calls up and says he saw your picture in the paper and they now know of your infertility.

Wild stuff.

Eric

KatieMc said...

I'm pretty open. And it has changed some of my relationships. It has brought me closer to people I didn't think would be close friends. And, unfortunately, has made me realize that some people just don't want to be that intimate with me. Which is sad, because with one person in particular, I thought we were close enough to share these heartwrenching things with. Guess not.

KatieMc said...

I'm pretty open. And it has changed some of my relationships. It has brought me closer to people I didn't think would be close friends. And, unfortunately, has made me realize that some people just don't want to be that intimate with me. Which is sad, because with one person in particular, I thought we were close enough to share these heartwrenching things with. Guess not.

mandolyn said...

I've been gradually opening up about TTC and the whole process over the past year. Before we were aware of problems, only my mom and two good friends knew that we were trying. We really wanted to surprise people with news that we were pregnant.

That kind of worked. After 8 months, we did surprise our families with the news. They were thrilled and called all the extended family and friends they could think of. My aunt published that we were expecting in our family newsletter, a few months before our big annual reunion.

In part, having so many people know about it was good when I m/c. We had such an overflowing amount of support it was amazing. But still awkward. It was hard put on a brave front when someone hadn't received all of the news. "So, I heard you two were expecting! When's that baby due?"
(tears)

Now I'm open to talking about IF as long as it doesn't make the other party squirmy and uncomfortable. My mother wants to know what's going on without all the details...that doesn't really work. For now, if you want to know, I'll tell. Sometimes, if you are reachable and I need to talk, I'll tell. When friends/family ask about our IF journey, I appreciate it. It shows that they truly care about what is going on with us, what is important. (Also, we can't ignore it, so it sucks when people close to us can.)

Flmgodog said...

We are just beginning our IF journey I believe. Our consult was today.
I have other health issues that I am very upfront, rah-rah, about but IF I am not. I really am only able to talk about it to a few people.
It makes it so hard. I work in a family business. I have siblings not that work with me but that I am very close with and I just can't talk about it. My older sister somehow found my blog and I know she reads it.
I have talked to a few friends but not many. I wish I could be "out" about my IF.

Anonymous said...

Certain members of my family know. But the ones who would watch me like I was in a zoo and keep asking "Sooooo? Any news?" every time I see them most definitely do NOT. (Also, horribly enough, the one time I WAS pregnant, I found out on the birthday of one of those people, and miscarried on the birthday of another one. Not something you really want to share.)

The friends at work who know are those who did struggle, or are currently struggling with inferility themselves, so I don't get any weirdness from them. My boss has NO CLUE -- and, going by the squirmy way he acted toward the one woman who was "out" for her entire time of trying (including surgery, IVF, etc) until the birth of her child, I will not say anything to him for as long as it is possible!

Vikingboy's family knows about the miscarriage, but I don't think he really talks about it with them. (He barely talks about it with me!) I've told his SIL, who had many m/cs herself, that we've been trying, and I assume the rest of his family knows, but it's not a topic of conversation. Or maybe it is, but since I don't understand much Viking I miss most of it! ;-)

The thing that pisses me off about being "in" in most areas of my life, is the assumption that, since I'm over 40, I'm "dead in the water" and/or childfree by choice. I mentioned this to a girlfriend dealing with the same age and IF thing, and she said that she gets around that by answering the question, "Do you have children?" with: "Unfortunately, no." Most people, she explained, will either back off or express sympathy and leave it alone. (Why do I have doubts that this is true?) I haven't done this yet, as I fear that my mental state is currently too fragile to deal with idiots and assvice dispensers, but I'm considering it when circumstances seem right.

Lisa P. said...

Coming back to this one b/c I had the most interesting/unusual thing happen to me yesterday.

I'm currently filling in for a friend who owns a maternity boutique. (Yes, I've had more than one person ask me if I'm crazy, but it hasn't been that bad.) Anyway... yesterday, a woman came in looking for some pants. In the process of helping her sort through things in her size/price range, I noticed she was a talker. She kept on talking even though she elected not to try anything on, and all of a sudden, quite out of nowhere, she said something about "this is our first, and we had to pay for it!" She was on progesterone and because I knew it was unusual for normal total strangers to know about being on progesterone when pregnant, I mentioned that I'd had losses and that the next time I was pregnant I'd likely be on it, too. She then told me everything there was to tell about her IVF experience, including the doc's name, the way she reacted when she found out she could never have children on her own, and that when someone had told her that it took another friend three tries before their IVF worked, that was "the worst possible thing for her to hear." Then she said "luckily for us we got pregnant with the first attempt."

It was kind of surreal, having a total stranger telling me this and without realizing I was going to do so, chiming in myself about my own fears. But after she left it felt like I'd broken some unwritten rule... I hate that I felt that way about it but thinking back on it, I realized it made me kind of uncomfortable. I'm more open about my losses with friends than a lot of people claim to be, but somehow the stranger thing just felt odd.

Of course, it could have just been timing since I'd just started a new cycle... emotional and all that. But part of me wishes I'd never gotten into the conversation.

Anonymous said...

I never fully came out, though I was just about to when we finally got pregnant. We decided not to tell many people right away, since we didn't want to have everyone asking if I was pregnant if it did take a few months (ah, back when we were still optimistic). I did tell two close friends, in the course of some of our discussions.

After trying for about a year, I told my mom. She and dad had tried for a year and a half to get pregnant with me, and she had to deal with a best friend who got pregnant if she and her husband drank from the same glass. Mom was great, she understood some of the testing involved, and knew what kinds of questions to ask. I wish I'd told her earlier.

At about a year and a half, I realized that I really wished I had told more people. It felt like I was lying when I told people that not much was going on in my life the day after I'd been to the RE and we'd discussed moving to IUI. But how do you bring it up when it's been going so long? I just couldn't figure out how to announce to my friends at the bar, "Hey guys, we have an announcement...we can't get pregnant!"

I finally decided that I would tell the truth to anyone that asked me the "when are you having kids?" question. Of course, as soon as I decide this, no one asks me. I did tell one friend, but I think it came off as extremely bitter and angry, which wasn't what I meant. In his defense, he was extremely sympathetic.

Now that I'm pregnant, I'm definitely out, to the point that I pretty much included the facts around how we got pregnant whenever I was announcing it. I think it's partly my realization that being able to talk about it would have made it so much easier for me, but I didn't know anyone else going through IF, and maybe if I talk about it, other people who run into similar problems will know at least one person that they can go to to commiserate.