Friday, November 30, 2007

Understanding infertility

I am having a funny day with my reactions to things. Not quite sure how to sum up my state of mind. Melissa has a very thought-provoking post up comparing going through infertility to cancer. I think it’s probably something that we’ve all thought of in one way or another. Most people just don’t understand what it’s like to be dealing with infertility and the insensitive, judgmental comments from those on the outside are a dime a dozen. I posted a comment on the post with something that I had been thinking of months ago. Now that the comment is up there, however, I am not sure that I made myself clear and I’m not sure I am clear, myself, in what I was hoping to express. I am going to include my comments below, and try to talk about them more (and ask for your thoughts)


Comment #1
I've actually thought a lot about this comparison myself. What I have come up with is that it might be easier to make the point (which you made beautifully, by the way, so this is in no ways a criticism) by using a disease/condition that is not life threatening. I've thought about posting about this myself but your post is just too good of an opportunity to waste! When I've thought about trying to get others to understand infertility by comparing it to something like cancer, my concern has always been that my arguments would be dismissed out of hand because I was comparing IF to something life threatening and that would be hard for some people to overcome. I found myself thinking instead of an injury I had a couple of years ago. I hurt my wrist while at work and what at first appeared to be a minor injury eventually turned into something much bigger involving 2 surgeries, occupational and physical therapy, and more. As I was dealing with this (for what ended up being more than a year), I felt desperate to get proper function back to my wrist (and my arm and hand as well). You could say I went to extreme lengths to fix it. It was not life-threatening, but not having full function of one of my appendages did certainly compromise my quality of life, to say the least. And no one in my life ever commented that I was being desperate, or that it was "God's plan" for me to have a janky wrist. Of course not. It was a medical condition that most people would have gone to lengths to correct. And yet, when those of us dealing with infertility, a medical condition, try various different medical procedures to help "fix" the problem, we are judged for it. Definitely a double standard.

But, to tag on to Tracy's point -- a lot of these statements are coming out of ignorance. Since we made the decision to adopt and to let it be widely known that we are adopting, I've really come to realize how little most people understand about the process. I just take it for granted that people know more than they do, both about adoption and just the process of reproduction in general (not to even mention infertility). I am constantly amazed about how little people know. And most people have no reason to know any of this. While it is somewhat frustrating to discover that our friends who have 3 kids do not even really know what an embryo is, that's just the way it is! They obviously never needed to know that bit of information... oh well.

Comment #2
I just wanted to jump back in here to say that I am appreciating this post even more as all the comments continue to come in. It has really made me think and explore my own feelings even more than I already had and I am actually working on a post right now to continue my thoughts on this -- but I'm thinking that it may take me a little while to finish. I appreciate what Kathy V wrote regarding my earlier comment and think she's correct -- my analogy is not complete. I came up with it months ago as I was thinking about the tendency to classify women going through infertility as "desperate" and thought it would be a way to connect to people in my own life and get them to understand more clearly how I was feeling and how that classification of "desperate" was hurtful and misplaced (even though I've used it to describe myself at times). Of course, I've never actually talked about this to anyone, just explored it in my own head. But the analogy of IF to an injury is not complete b/c an injury such as I described is usually treatable and curable; whereas infertility is for most of us something we have to live with always. And as has been pointed out, it can also sometimes be life-threatening. I should know this, having had 2 ectopic pregnancies, but it's something I tend to push aside and not think about. It's only when I get the rare reaction of "how scary, you could have died" that I remember again how scary it was/is. I'm appreciating this post and the comments because not only have they got me thinking but also because of how nice and validating it is to read other people reacting the same way that I am. So thanks Melissa for starting such a good conversation!


I think perhaps the sign of a good blog post is if it makes you really think about something and question your reactions. So I used the comparison of my infertility to the injury of my wrist because it was something that I experienced personally and that the people around me, (friends, family, coworkers), remember and saw all that I went through. I think in many ways it’s a good analogy, but only up to a point. I have to say I was somewhat proud of myself when I came up with the analogy because I thought it might possibly really help people understand IF a little better – when I was first thinking about it what I was mainly trying to address was the whole issue of desperation and the negative connotations of that word, “desperate” that come to be associated with people struggling with infertility.

So my main point was that no one ever referred to me as desperate when I had appointment after appointment with doctors and various other medical practitioners in search of getting the range of motion and overall functionality in my wrist back. The difference between this injury and my infertility is, of course, that my wrist did eventually heal. The only sign that I was ever injured is the 3 inch surgical scar. And that’s almost a good thing. It’s like an outward sign of what I endured (since it was a work injury I like to show it off as my level of commitment to the organization!). The scars of my infertility are all internal, invisible on the outside. And despite all the doctors’ appointments and treatments and surgery, my infertility is not healed. And it never will be. I suppose there are cases where infertility is treated and cured, in a manner of speaking. But many, if not most, of us we will always be infertile.

For those whom treatment successfully results in a pregnancy, the infertility is not cured. It doesn’t just go away. Because the treatment was only successful that one time—I say this not to discount the joy of that success but merely to make the point that if the couple who had success once desire to build their family further, they are usually once again faced with their infertility to deal with all over again. And just because treatment worked once does not mean it will work again. In my own personal case, my infertility will never be “cured” – because I no longer have functioning fallopian tubes the only way I’ll ever get pregnant is through IVF. So this is where my analogy breaks down – I may be able to get someone to understand the desperation piece somewhat better when comparing it to an injury like a broken arm or leg, but it doesn’t get at the lasting nature of infertility. I think this is why we tend to go to an analogy like cancer. I didn’t want to go there, however, because that is not quite right either. To me, one of the hardest things about infertility is the fact that while the treatment is medicalized and involves large amounts of medicines and oftentimes surgery, in reality you’re not really “sick” (most of the time).

You’re not sick and yet you are taking large quantities of medication, often involving very large needles. You’re not sick and yet a lot of the time you feel like complete and utter shit. You’re not sick and yet you have more doctors’ appointments than anyone you know. You’re not sick and yet you are having surgery, often multiple times. And because you’re not sick in the traditional sense of the word, you also have to deal with the insensitivity of the general public. And, because reproduction is supposed to be something that just happens naturally, everyone feels entitled to have an opinion on the matter and to share their “expertise” with you.

But as I noted to my comments, most people really have very little expertise. I have become so intimately familiar with all aspects of the process that I often forget that others will not know what I am talking about. I just mention off hand that we have done IVF and throw around the terms transfer and retrieval without stopping to even think that they probably don’t have a clue what I’m talking about. So while I can get very upset (alright pissed off) by people trying to share their non-existent expertise or uninformed judgment, I try not to get too upset by sheer ignorance. I think it is unrealistic to expect most people to really understand the details of IF, just as most of us not directly impacted by it don’t understand the details of other diseases; however, I think it is completely justifiable to expect people to show more sensitivity and empathy. And not just for infertiles but in general.

Tuesday, November 27, 2007

On your marks

The newest wait has begun. We are officially in the game. In other words, not only have we chosen an agency but have also given them a rather large “down payment.

So we chose an agency in Texas and decided that it would be a good idea to go down there and meet them in person before handing over a large chunk of money. K’s family is in Dallas, so we decided to go over the Thanksgiving holiday since we didn’t have plans for Thanksgiving anyway. We actually made quite a trip out of it. We flew into Austin on Sunday morning and visited with some friends. We then got up on Monday morning and drove to San Antonio to meet with the agency. They were very nice and spent almost 2 hours with us. We already had everything together and I think they were rather impressed when I pulled out 5 copies of our photo album and profile. We went through all of our paperwork and ended up with very little left to do. We didn’t’ pay the upfront fee while we were there because we were waiting for a credit card from the National Adoption Foundation to arrive but we did leave our profiles and photo albums. It felt a little weird to leave them there!

Anyway, we then went to Dallas to spend Thanksgiving with K’s family. Yesterday, we called the agency with our credit card number. So, we are now in the adoption game for real for real. And it feels really good. In fact, I have checked out several books on infant care from the library and we spent this evening clearing out the room that will soon be a nursery. Up until this point the room has served as one large closet for K, but he is now officially kicked out. And I am busy sanding down a dresser to get it ready to paint, and if that goes well it will be followed by a bookcase. We are also talking about ideas for painting the walls and decorating. I don’t want to go too overboard with getting things ready or buying a lot of stuff since we still have no idea how long we will be waiting, but it feels good to at least be able to start on this project (something I’ve been waiting to do since we moved in to this house 2 ½ years ago).

For the past 3 ½ years I have not let myself read about pregnancy or baby care (K actually hid the pregnancy books my SIL had sent upon hearing of our first pregnancy. They arrived the day that I took the methotrexate shot. I’ve since found them but they remain tucked away out of sight). I didn’t allow myself to think too much about what we were going to do with a nursery. And I certainly have not been able to think about, much less look at, baby gear. So it feels really good to be able to do these things and to know that I have a reason – we are getting a baby, we just don’t quite know when. There are still things that are hard for me, but I’ll save those for another post. For now, let’s just end on that positive note, because you never know how quickly things can happen. I was gone for a week and didn’t check any of my blogs. I got back to find out that R at WannabeRE has a daughter! Wow. That happened fast. If you get a chance, go over and congratulate her!

Tuesday, November 13, 2007

Questions

I’m assuming it’s a fairly universal phenomenon to question your own decisions based on the decisions of others, to sometimes feel judgmental of others whose choices differ dramatically from your own, or to question the validity of your choices in the face of others’ differing decisions. (Are you just wondering what the hell I’m talking about?)

Let me be more specific and put this in terms we can all understand (meaning, of course, infertility). The decisions to continue on with treatments, to pursue adoption, or to give up the dream of being parents are ones that none of us make lightly. We are all coming from different places, with different life experiences and infertility experiences, different diagnoses, different budgets, and different emotional and physical thresholds. Therefore, it is not at all surprising that we all make different choices in how to proceed in the face of our infertility. But that does not eliminate the judgment that comes with those decisions, both from friends, families, and strangers outside the world of infertility as well as from those in the infertility community. Besides the questioning and judgment of others, I believe that most of us probably question, at one time or another, ourselves and the choices we are making.

Example: One of my SILs struggled with pregnancy loss and secondary infertility while trying to conceive their second child. When K and I started trying, she was just recovering from her second miscarriage and beginning to move into infertility treatments. In the 3 ½ years since, they went through the standard IF testing, medicated IUIs, and finally to IVF. They attempted one round of IVF, which was unsuccessful and then immediately moved to adoption. They have since adopted two children. Their family is completed. (You can see where this is going I’m sure…) Ours has not even started. Which of course leads me at times to question our choices – especially the decision to try IVF a second time. I realize intellectually that everyone is different (see above statement) but emotionally, I can’t help but question myself sometimes.

And then I come to the flip side of the equation, which is judging others’ choices based on my own. And it’s interesting how it works both ways, and for me at least, I sometimes feel competing emotions all at the same time. When I read about someone who is continuing on with treatment despite multiple failures and years of trying, I sometimes find myself wondering why they don’t just adopt (yes, I’m very, very aware of the irony of this statement). I sometimes find myself feeling less than sympathetic towards those who determine that adoption is not the right choice for them or at least not yet. (It’s right for us, why wouldn’t it be right for everyone?) But then, I am often almost immediately hit with a competing emotion of questioning my own decision (It’s not right for them, am I sure it is right for us? Maybe we should try one more cycle…or donor eggs…) I have also found myself feeling less than sympathetic to those going through secondary infertility, or infertility a second time around (You already have one, quit complaining! We don’t even have that yet.) And then I remember that we also want more than one child and will have to deal with all of this a second time.

Which I guess brings me back to my original point, we are all so different. What is right for one is not necessarily right for the other. I think though, that it is often easier to see this when the questions and judgment are coming from someone on the outside – outside yourself or outside the world of infertility. It’s much harder to recognize it when you yourself are doing the judging (of others or of yourself). And the decisions are so hard. That is what brings me back. Couples who aren’t experiencing infertility never have to think about these decisions. No one would question a fertile couple’s desire for additional children. Most people just decide to have kids and have them. They decide how many they want and that happens for them. They don’t have to make the difficult decisions that we make – when and how and whether to continue trying.

I have always wanted at least two kids. But sometimes I find myself thinking that maybe we’ll just be done after one. My sister is dealing with this issue right now. She went through hell bringing her son into the world. She wants three kids. But right now, I think that the decisions and sacrifices (financial, emotional, and possibly physical) that will go in to making that happen for her is feeling too overwhelming. And I know it’s not as easy as saying “just adopt” or “just try IVF again” because she’s my sister and I know her situation, but I also know that it wasn’t that easy for me (and still isn’t). Which once again reminds me not to judge others.

What about you – do you ever find yourself questioning others’ choices? Do you ever question your own because of someone else? And how do you respond when someone questions you?

Monday, November 12, 2007

On cubicles and not working while at work

Ok. So I’m at work but having a very difficult time doing any of the things I’m supposed to be doing (like working). This of course is nothing new. Still, it’s a bit of a problem. I just can’t focus. The time seems to be dragging by. I can’t believe it’s only 3:00. The thing is, I have plenty of work that I could do. I just can’t seem to motivate myself. I don’t want to be here. I hate working in a cubicle and sitting staring at a computer all day long. My hand hurts and my shoulder is killing me.

My cubicle is in the back corner of the office, which I like because it’s right by the back door (meaning I can sneak in and out without anyone really noticing). But…I’m also pretty isolated over here and the only access I have to a window is to leave my cube or stand up on my tiptoes and possibly get a small glimpse of sky. The cubes are all designed so that you are sitting with your back to the opening. It is the most awkward set-up I can imagine and it’s obvious that whoever designed these cubicles never worked in one. The other problem with working in a cubicle is the total lack of privacy. I can hear just about everything said by those who sit closest to me and I’m sure they can hear me. Which is a problem when cycling, etc. and you need to make (or receive) personal phone calls.

I can’t tell you how much time I’ve spent in the hallway with my cell phone these last 2 ½ years. When I think back on this time, one of clearest images will surely be of me sitting in the hallway on my cell phone with a pad of paper and pen in mind hand writing down instructions or on my cell phone and crying or some combination of the two. I hate that fucking hallway. Come to think of it, I’m not so sure that I don’t hate my job as well. I’ve been trying to have a baby the entire time that I’ve been working here. No matter how good my job was (which it’s not), that would probably be enough to make me not like it.

Tuesday, November 6, 2007

Water, water everywhere

But nary a drop to drink.

I really hope that eventually I will get to the point where I am not bothered by seeing pregnant women and hearing about other women’s pregnancies. I can’t say I am at that point now. As we move further along in this process towards adoption, I am slowly coming to the point where I can believe that we really are going to get a baby at the end of all of this. And that is a very exciting prospect. I know that with adoption the question is when rather than if. But, I’m still having a hard time convincing myself that it will truly happen for us, and I probably won’t believe it until I’m holding our baby in my arms!

And while I truly believe that I am embracing adoption with open arms and all the love I have to give, I am still sad about what I have lost and will never have. On almost every adoption website I have been to there is a picture of a very pregnant belly somewhere on the site. And it makes me so sad to look at that and to know that that will (most likely) never be me. I will never get to feel my baby moving inside of me. I won’t get people reaching out to touch my belly and smiling at me for no other reason than that I’m pregnant. I will never experience the “surprise” pregnancy or surprising friends and family with our news. I won’t buy maternity clothes. I won’t get to breastfeed my children.

I have been trying to get pregnant for so long and wanting to be pregnant for so long. At some point along our journey, I really felt as though I had moved beyond the wanting to be pregnant. In fact, I felt that pregnancy itself would take too long and that I just wanted a baby right now! And for the most part, I do feel this way. Most of the time. But I’m still affected every time I hear about another friend or family member who is pregnant. And I still struggle every time I see someone else who is obviously pregnant.

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I started writing this post yesterday and stopped, assuming I could pick up where I left off. But…I am having trouble getting back into where I was going yesterday. After I stopped writing I checked in on some of the blogs I read. I ended up going to the blog The Unlucky 20 Percent (thanks Samantha) – at 20 weeks pregnant, Ann and her husband just learned that their baby has a rare and completely lethal condition. She is being induced today. I cannot even imagine what they must be going through right now. My heart aches for them.

But, reading her post yesterday really got me thinking. And not necessarily in the typical way you might think -- I’m not going to write about how it reminded me that the loss we are feeling could be much worse (although it did), because what struck me even more was that I realized that in spite of feeling sad about how things have turned out for us – I also feel relief.

Yes, relief. There is a part of me that is actually relieved to not be pregnant. And I realized yesterday, that it is a bigger part of me than I thought. My experiences with pregnancy were all very brief and sad and scary, and I know that if I ever get pregnant again that I will be terrified. In fact, for a whole year that we were trying, I didn’t know whether I was more scared of being pregnant or not being pregnant because the fear of another ectopic was so great.

So while I know that I will still have moments of sadness about not being pregnant and never being pregnant, right now I’m going to hang on to my feeling of relief.

I hope this doesn’t read like I’m saying I read her post and thought “I’m so glad that isn’t me.” I guess there is some of that in there but that’s not what I’m trying to get at. I mean more that I realize that with all the worrying I am doing about with adoption, I am relieved not to be worrying any longer about what is going on with my body. And more than that even. But I’m having trouble capturing it in words. Does this make any sense?