It's Personal

That was the title of a post I wrote over a year ago now. I was looking through some of my blog archives this weekend, and I happened upon it just by chance. I couldn’t help but find the irony in this excerpt though:

There is never a “right” answer in the eyes of everyone else. If you adopt, someone wants to know why you didn’t utilize fertility treatments. If you do utilize fertility treatments, someone wants to know why you didn’t adopt. If you adopt internationally, there are questions as to why you didn’t adopt domestically. If you do adopt domestically, someone will undoubtedly ask why you didn’t choose to adopt an older child. Or one within your race. Or even a child with disabilities.

Everyone has an opinion. An expectation for you to make the same choices they would if they were in your shoes. 

Even though they’ve never actually been in your shoes.

And for some reason, it seems that so many of us within the infertility community feel the need to answer. To defend our decisions. To explain ourselves, when in reality; no explanation should be necessary.

Because it’s personal. This entire thing is personal. And it shouldn’t become our responsibility to make sure everyone else understands that.

At the time, I was writing about the opinions of outsiders. The fact that everyone in your life will have thoughts about the choices you choose to make in this journey. And some of them (more than others) will even believe they know what you should be doing instead of whatever it is you're actually doing. They will judge based on their own personal experiences, and you will in turn immediately jump into defense mode. Because you have thought this out, and you do know what you are doing. The choices you have made are your own, and you will defend them with everything you have got in you.

Here’s the ironic part – I wrote that post talking about outsiders, without at the time realizing how quickly that same judgment could come from right within our own ranks.

Two week's ago, I wrote a post about why I do not ever see myself pursuing IVF again. I wrote it from the heart, and every single word detailed some of the very real issues surrounding my decisions. I said more than once that I was giving only my own version of the truth, as it pertained to my life and my experiences. I went out of my way to make it clear that I held no judgment for anyone making different choices. I repeated over and over again the fact that I was talking about me, at the place I am in my life now, based on the things I personally had seen, experienced, and learned.

Initially, the only response I got to that post was positive. On both  Facebook and Twitter, the reactions were almost nothing but complete support. And within 48 hours, my e-mail inbox was flooded with women thanking me for putting words to their own thoughts and feelings. Every single one mentioned that they too were now at the point I am, after their own rocky foray into fertility treatments. After their own heartbreak. After realizing they had reached their own line.

These weren’t short e-mails. They were pages upon pages of women detailing their own stories to me. Explaining how they too had reached a point of saying “enough”. Describing their own personal journeys of reevaluation, and eventually – determining that any further treatments would be going too far. For them. For their lives. Based on what they personally had seen, experienced, and learned.

I was touched. Unbelievably touched. I had written that post with so much fear that I  was the only one who felt this way. So much apprehension that I would be viewed as a quitter for recognizing the fact that I had come up against my own line. These women, in reaching out, were giving me a gift I don’t think they realized. They were letting me know that I wasn’t alone. And that just because I had reached this point didn’t mean that anyone believed I wanted a baby any less. It just meant that I had come to recognize that going any further with no guarantees at all wasn’t right for me. And that was OK. Because eventually… we will all either take home a baby, or reach the point of needing to back away ourselves. We all have a line. A point past which would be going too far for us. And while half of us will get our baby in the end, the other half will hit that line. I realized in receiving these e-mails how important it was to acknowledge that group of women too. The ones who don’t get the happy ending we all go into this hoping and praying for. The one's whose stories for some reason are so very rarely ever heard. 

It was almost a week later before I realized there had been any negative reaction at all to my post. Call me naïve, but I really believed that my words had been read as I intended them to be – as reflections of the place I am in my life and infertility journey, and nothing more. But then I happened upon a post of a blogger I read regularly who only mentioned in passing what I had written. She didn’t go into details, and didn’t give her opinion one way or another on it. She just mentioned it. And when I scrolled down to the comments on her post, I damn near threw up.

It was the first time I realized that there were some who had greatly misread my words. Some who had walked away from reading it with hurt feelings and even anger that they were still holding on to… now a week later.

I worried on that all night long. Sick to my stomach over anyone reading judgment into my words that simply wasn’t there. I read and re-read my post, looking for where I had gone wrong. Wondering how I could explain to those I had hurt that my intention had never in a million years been to judge. That I had simply been trying my best to explain where I am now, and why.

The next day I sent an e-mail to a friend letting her know what I had seen and asking for her honest opinion about what I had written. We had spoken in the days since my original post, and everything had seemed perfectly fine. She had not once brought up the post in our conversations, and I had not once thought to bring the subject up myself. Until now. 

Her response had me in tears before I even made it half way through her e-mail. Because for the first time, she was telling me that she too had been hurt by my words. That she too had read judgment in what I said that I had never intended to put across. She explained that our friendship was still solid, and that she still loved me and knew me well enough to know where my heart had been when I had written the post in the first place, which was why she hadn’t broached the subject with me herself. But since I was asking her about it now, it was fair for me to know that I had hurt her too with my words. Intentionally or unintentionally, I had hurt her.

It should be noted that my friendship with Lindsey is fine. It has always been fine. There was never a point in any of this when we weren't talking to each other. She did wait a few days to let me know that I had hurt her, and I did (and still do) feel absolutely terrible for having done so, but... you did not witness the public fall-out of two real life bloggy friends last week. If things had been anywhere near that dire, I can pretty much guarantee you that neither of us would have brought it into the public arena for commentary. We both had some things we needed to say, but we also both feel pretty strongly that blogs are an amazing place to be able to express yourself on some of these touchier subjects. We have talked about this topic ad nauseum between us though, and... we are good. I will still be at her baby shower with bells on later this week, and I will still be the most doting auntie you have ever met when her little one makes his way into this world. I love that girl with all my heart, and am thankful every single day to have a friend like her in my life.

But after she and I talked the whole thing through, I found more and more posts coming up across the web referencing what I had written. I’ve seen at least 5 of them now, and in each one it has been the comments that have followed which have torn me up the most. The posts themselves were all fair depictions of the bloggers own personal point in this journey, and I haven't read one that has left me feeling slighted or hurt. But the comments... the comments are a different story entirely. 

I am someone who has a guilty conscience like you wouldn't believe. I will rat myself out when I've done something wrong long before I ever actually get caught for it. My dad will be the first to tell you that often I error on the side of being too honest, out of fear of ever being perceived as anything but. And when I hurt someone - I mourn that more than I ever mourn being hurt myself. This dates back to childhood for me. I was always the kid who only ever needed a stern look before I would be bursting into tears and promising to never do whatever it was I had just done again. I like to think that as an adult, I am pretty good at recognizing when I truly mess up and doing whatever I need to do in order to fix it. Apologies are important to me.

So I do  genuinely apologize to those I hurt. With all my heart. I never intended to make anyone feel as though I believed the words I was saying as they pertain to me should in turn pertain to everyone else as well. Which is why I repeatedly mentioned that I was talking about myself. In the place in life I am now. But the simple fact that there were so many currently in the trenches (or holding their babies after battle) who read my words as a judgment against them and their choices makes it obvious to me that perhaps I didn't make that point as clear as I should have. And for that, I don't know if I can ever apologize enough.

Still... I can't help but feel that for some, it wouldn't have mattered how many more times I said I was only talking about myself - they still would have read my words as a judgment. They still would have taken it as a reason for indignation.

And I have got to say right here and now: that is not on me.

I have to wonder how different the reaction would have been if I had said everything else I said in that post, word for word, but had ended it instead by saying that for me, for the place I am now, IVF felt like it was going too far; but that I didn't care and I was going to ignore that feeling in my gut and push forward anyway. What if I had said all that I did, but then finished it by saying that I was willing to do whatever it took to get my baby and I was going to start trying again this year? Would the reaction have been different then? Because I've got to admit, I think it would have been. I think those now questioning my character online and me as a person would instead be throwing me all the support they had. Rooting me on and wishing me luck as I stepped back into the ring. And I have to say that in thinking that, I am realizing the flaw is not in what I said, but rather in how some chose to take it as a judgment against them when it was nothing of the sort.

And that is not on me.

I have seen a lot of the comments out there angry about my mention of progesterone. In reading them I’ve been confused, because I didn’t remember making progesterone a big part of my piece at all. So I went back to my post, and I re-read it. I then did a word search, just to make sure my suspicions were accurate. And sure enough, the word “progesterone” came up one time. Out of the 2400+ words in that post, progesterone was mentioned once. Yet the inclusion of that word seemed to incite a firestorm about my spreading inaccurate information. I only even mentioned progesterone by name (rather than referring to all of the drugs as a whole) because it was in finding a warning inside the box of progesterone injections during my second cycle that I first began to question what these drugs could do not only to me, but also to my baby. That was the first time I found myself questioning how far I personally was willing to go. 

The irony is, that when I first discovered that insert I actually wrote an  entire post about progesterone. An entire post about nothing else besides this drug, the warning I had found, and how terrified I was about what that warning meant. I actually titled the post “How Is This OK?”, and printed the terrifying warning word for word before expanding on my own fears and the questions I had about whether or not this was all taking too many risks. But in the end, I acknowledged that I was still willing to take those risks. No matter how much they terrified me, I was still willing to move forward. That post was far more strongly worded in terms of Progesterone use, and was centered entirely around that drug and nothing else. Do you know what the overwhelming response to that post was then? Complete and total support. Not a single person chastised me for vocalizing those fears or putting that warning and those words out there into the internet ether. Not one. All I received was encouragement and acknowledgment from so many others that they too had experienced these same fears, but that we all had to do whatever was necessary in order to get our babies. Now that I mention that drug one time though, as being a tiny piece of the extremely large puzzle in my decision that is nothing if not complicated; I have suddenly committed an egregious act.

The funny thing is that if I were to get pregnant naturally and the doctors determined I wasn’t producing enough progesterone to sustain the pregnancy, in a heartbeat I would be giving myself those shots in the ass again. Without even thinking twice. In no way, shape, or form is the warning inside a box of progesterone the defining point of my decision not to pursue IVF again or the sole reason I have feared that this was going too far for me. It just so happened to be the first time I really found myself questioning what I was doing and why, which is the only reason it warranted any mention in that post at all. Why was it OK though, for me to express those fears and thoughts and concerns then, but not now? Was it because then I was able to say "These are the risks and they scare the hell out of me but I'm pushing forward anyway" and now I'm saying "These are the risks and they scare the hell out of me and I've decided they just aren't worth it for me anymore"? Is it acceptable for me to express these fears as long as I am still willing to trudge forward and accept the risks, but not when I'm not? Is that really the kind of community we've built?

I've been thinking also about the posts I have written in the past about adoption. The times when I have expressed my many fears surrounding that, and the reasons why I personally chose to pursue fertility treatments first and think about adoption later. In each of those posts, I expressed very real possibilities and fears. Things that happen every single day, and that really do make me uneasy about adoption and my very likely future in pursuing that path. Never once has anyone chastised me for sharing those fears though. Never once has anyone in this community read judgment in my words then. In fact, more than once in regards to those posts I have received “thank you’s” from women who said they were going to forward my words to friends and family so that there could be a better understanding of the choices they too had made. So I have to ask now, why was it always acceptable for me to express my very real and valid fears surrounding adoption, but it is not acceptable for me to do the same in terms of IVF? 

Don't I deserve the same support in saying that this is where I am now as I did when I was willing to go the distance? Haven't I earned that? I read one comment somewhere that questioned whether the reaction to my post would have been different if I had tried and failed 8 times instead of 2. I've actually wondered the same thing. Which honestly hurts my heart. How far should I have had to push myself (physically, mentally, and financially) before being granted the right to acknowledge the reasons I can push no more?

Because let's not forget that I have actually done this 4 times now. Twice for myself, and twice when I donated my eggs to other infertile couples. I have seen what these drugs do to me and my body 4 times. I actually had no issues with endometriosis at all before I donated my eggs, and my problems started (and drastically escalated) within a year of my last donation. Do I believe that these drugs caused endometriosis for me? No, I don't. I believe that it was likely always an underlying condition that would have become an issue at some point or another no matter what. But I do think these drugs exacerbated the condition for me and contributed to my case being as aggressive as it was. I even believe that the drugs involved caused the endometriosis to flare so badly for me during my cycles that my body almost became too toxic for a baby to be able to thrive. Think about it: all that inflamed and diseased tissue inside my body, where those embryos of mine were then expected to be introduced and choose to stick around? I honestly don't even think it was possible with the way the drugs affected me personally. They caused such massive flare ups that I don't believe those embryos ever had a chance. Not in my body anyway. Because with each cycle, I found myself far worse off in terms of endometriosis than I had been just a few weeks prior to starting the drugs. I had surgery, went on Lupron, and then went straight into IVF and still... those drugs had me miserable within weeks. I truly do not believe I could ever get pregnant with endo flaring that badly inside of me. 

I am not naive or stupid when it comes to what is involved in this process though. I am not some fear monger who has not done her own research. I am someone who has been there, in the trenches, 4 different times. Obviously the emotional toll was far greater for me during my own 2 cycles, but still... I have been in this world for 4 years now if you count those donations. And in creating this blog, I have become exposed to even more information than I ever would have had access to otherwise. I have consulted with top doctors all over the world, some who have actually contacted me personally with various questions about patient experiences or to ask me to write content for their websites. I have also been contacted by women who have been taken to the brink by infertility, as well as women who have found their happy endings specifically because of the treatments available. I am not ignorant to the possibilities available or the heartbreak that can await some. I am not some outsider who simply doesn't get it. I have been there, in the middle of it, and I have seen exactly how these drugs affect my body. I have seen women go through outcomes in all of this that I know personally I could never handle. I have watched as some within our community have had their marriages and lives ripped apart by the drive to create a baby, only to still come up empty handed in the end. And I have witnessed the miracle as the lucky few have actually made it to the other side with their baby in their arms. I have seen it all, done my research, and come to the conclusions that are right for me. That does not for one second mean that I believe everyone else should in turn come to my same conclusions. That does not mean I am judging those who don't, or am waiting for a chance to convert them to my way of thinking. Because I'm not. I still get 3-5 e-mails a week from women in varying stages of this journey, and I still do my best to help each and every one of them in terms of the decisions they have made for themselves. Never once have I tried to talk anyone out of pursuing the path they have picked. And more often than not, I am there pointing them in the direction of doctors, clinics, and research I have learned about that can help them with the path they have chosen. So in all that support I have given to everyone else, and all the celebrating I have done for those who have found their happy ending; when am I allowed to be honest about where I personally am in this journey now and why?

I don't believe my truth is everyone's truth, but I do believe I have earned a right to feel the way I feel. And even more - I have earned a right to feel that way, and to be open and honest about it here.

Because at some point in this journey, we will all face a fork in the road. Either we will walk away with our baby and it all will have been worth the sacrifice and struggle, or we will hit our wall and have to decide it is no longer worth it to keep pushing forward in fertility treatments. At which point, we will face another fork of adoption or living child free; an entirely different set of painful and difficult choices that are completely individualized to one's own experiences and truth. But one way or another in terms of treatments, we all quit eventually. Either with or without a baby. And at least in terms of the statistics, it would seem that more end up having to come to terms with the fact that IVF is no longer worth the toll for them, then those that end up with the happy ending. We can't keep trying forever though. There is a line for all of us when eventually, we have to stop. And those on the other side of that line deserve to have a voice as well. They deserve to have the same support and understanding that those still trying and those with the happy ending deserve. Because by a simple twist of fate, any one of us could have found ourselves sitting on the other side. And that deserves to be acknowledged.

Just because you are stepping away does not mean the hurt suddenly heals. It does not mean your body has suddenly stopped disappointing you or your womb has stopped aching to be filled. It does not mean you no longer need any support as you venture on to whatever comes next. 

I read one comment mentioning that the main flaw in my original post was that I explained too much. I can acknowledge that as a possibility. I mean, look at what I have done just here, in this post. When I have something to say – there is no holding me back. I keep going until I feel like I have exposed every raw feeling I have on the subject, because writing is my therapy and that is exactly what I use it for. I literally wrote an  entire novel about my ex boyfriend and the hurt he put me through. So no one should be overly surprised that I would go too far in attempting to explain how my thoughts and feelings about IVF have changed.

But this one time, I actually had a reason for going too far. I have been saying for the last 6 months that I did not see myself ever pursuing IVF again. In varying degrees and to varying levels, I have been saying that I am done. Both in real life, and here. Yet I have continually heard even still from the people who love me the most that they cannot wait for me to try again. As if they can't hear me, or think I'm incapable of making this decision. As if they think they know what is best for me. So I truly felt that the only way to make it clear that this is the decision I have come to and that it is right for me, was to outline the reasons behind that decision. To be honest about what has led me there. Not because I think those details and fears and risks should then also influence everyone else in their own decision, but because... I need there to be an understanding that these are the conclusions I have come to and they are the right conclusions for me. I have been there. I have traveled this road. I have injected my body with these drugs now 4 different times. I have given completely of myself to women who couldn't have conceived without my help. I have seen firsthand how these drugs affect me and my body personally. I have seen the worst case scenarios play out more times than I can count within this community. And I have watched helplessly as my fertility has been stripped away from me in a relatively short period of time. I have come to the conclusion that the less than a coin toss odds that I will be able to bring a baby home in the end are not worth the risks. Again, ALL of the risks - not just those detailed on one handout in a progesterone box. I have come to this decision for me, based on my own personal experiences, knowledge, and understanding of my limits. And I needed there to be understanding, respect, and support for that both in my real life, and in my blog life. Because I can’t keep hearing about how I’ll try again one day from people who can’t possibly understand how sure I am that I won’t. I can’t keep having that waved in front of me as though it’s the Holy Grail. As though I won’t ever really be able to find happiness until I do. Because I am here to tell you that one way or another – I am determined to live a happy life. Even more; I am determined to be a mother. And I don’t need anyone having pity for me or coming to the conclusion that my life is incomplete and will be so until I go down the path of IVF again. Especially when I truly do not believe that is the right answer for me anymore.

Even in saying all that though, I mentioned that I was open to the fact that one day – my mind may be changed. I learned a long time ago to never say never, because life will inevitably have you eating your own words. For me, I know that I am done. But I can’t say for sure how I will feel when Mr. Right comes along. Not because I think he will suddenly be the salve for all my discomfort surrounding IVF, but because I can’t imagine looking into the eyes of someone I love and telling them they can never have this because of me. Because I am broken and refuse to go any further. My hope is that whoever that man is, he will be a man who will be open to filling our home with children by whatever means possible – including adoption. But until I meet him, I can’t be sure that I am absolutely done. I can only say that for me, for where I am now, based on what I have seen, experienced, and learned; I don’t believe I will ever go down that path again.

And I need that to be understood, respected, and supported. 

I can honestly say that coming to this conclusion for myself was not an easy one. It took time, healing, distance, and a deep reflection on all that is involved and what it is I really want in the end. Coming to this conclusion for me, has taken a great deal of strength. Just as much (if not more) strength as it took for me to pursue treatments on my own in the first place. Being a mother is the only thing I have ever really wanted. Carrying a child and protecting and providing for them from the start has always been a dream of mine. Long before it was something I ever assumed would be taken away. This is not something that is easy for me to walk away from. It is not something that is easy for me to admit I am done with. But I am making the absolute best decision for myself. Based on what I know, what I have seen, and what I personally have experienced. And I am not the only woman who has reached this point.

In the last week, I have gotten so many e-mails on this topic that it isn't even funny. Initially, I asked a few of the women writing me if I could quote them in a follow up post. I felt it was important to include their voices, and to show how plentiful these women actually are within our community – still silently supporting you, even if you don’t realize it. But in writing this, I realized that I shouldn’t have to use their words to back up my own. In your hearts, you all know they’re out there. What was saddest though, were the varied reactions I received to these requests. Some were eager to be included, sending me even more of their thoughts and granting me permission to link to their blogs. But most, were anxious. Giving me permission, but asking me to leave out any details that might lead others to realize who they were. Or saying they would rather not be included at all. Not because they didn’t want their voices to be heard, or because they didn’t stand behind their own decisions – but because they were afraid of how they may be labeled in this community if others realized they had reached a point of being done.

Does that break anyone else’s heart but mine?

I received an e-mail just this morning that I haven’t even had a chance yet to respond to. She was writing to tell me that she isn’t where I am at, but that she still thought I should know she supported me. And that she understood in reading my post that I had never intended any judgment in my words. That I had simply been speaking from the heart, and sharing my own truth, as it pertained to me. She said she understood that, and then she said:

For all the talk about the ALI community being the most supportive community ever, it's really only true so long as you are in the trenches, with your body, mind, heart and bank account all suffering greatly.

I almost cried in reading those words, not wanting them to be true at all. But fearing that after some of what I have read about myself in this last week… it just might be more true than I care to admit.

I am hurt. Beyond hurt. Still hurt. Because while I never intended any judgment at all to be read in my words, I can promise you that there has been plenty of judgment in some of the comments being made about me across this community. I have never judged you or your choices, and I never would.

But can you say the same in return?

Do we still deserve support when we step off this ride, for our own reasons and based on our own experiences? Or is it best for us to simply slink away? Silently supporting, but keeping our own stories to ourselves out of some perverse desire to grant others respect for their choices that we don’t feel we deserve in return?

Do we really want to be a community that segregates our support? Giving it only to those who are exactly where we are at the exact same time? Revoking that support quickly if someone manages to make it to the next stage, or decides to step back?

I have always argued that when one of us manages to find their happy ending, they still deserve to retain the friendships they created here. And they should still be granted the right to use their blog as a platform for telling their own story. Even if that means occasionally highlighting some of the less than pretty sides of pregnancy and parenthood. They deserve that. They have earned that. And true friends, will stand by them in that.

Shouldn’t the same be said for the women who reach their line, and realize that going any further is no longer worth the risks to them?

Don’t they still deserve to have a voice?

To tell their truth?

And to receive support and friendship in sharing their story?

It’s personal. To each and every one of us, it’s personal. And our reasons for making the decisions we make along this path are complicated. But that doesn't mean we have to jump to argue against those making decisions different from our own, determined they are judging us even when they may not be. There is nothing easy about infertility, no matter what choices you make. There is nothing about any of this that is simple or universally right for anyone. Being a mother shouldn't be this hard. Ever. Period. But there is no reason for us to ever find ourselves in a battle against each other. Because no matter what you decide or what route you take: infertility fucking sucks.

For all of us.

What kind of support do you hope to find when you reach your line, or make it to the other side?

I can tell you that I am not going anywhere. I will continue writing, right here, for me, about my experiences and my life and my decisions. Regardless of whether or not there is anyone left here to read. Regardless of what is being said about me and my truth. And regardless of who is still left to support me in the end. This space is not meant to serve as a map for how you, or anyone else, should be living your lives or handling your infertility. These words here are my own, as they pertain to my life, my experiences, and my truth. I have always been clear about that. They are my therapy, and my reality. I will continue writing. For me, and with the determination to be as true to myself as possible. Always. 

I never want to hurt anyone. Anyone who knows me, knows that to be true.

But this is my story.

And it still deserves to be told.

P.S. I know there are a few that have been upset that I didn’t have comments available for this series of posts. Unfortunately, that is not going to change. This is still my space, for my truth, my story, and my reality. I won’t apologize for that. I write for me, and no one else - and going comment free has been one of the most liberating things I have done in blogging thus far. But if there is any strong desire to engage with me personally in regards to this post, or the other two it is in reference to – please remember that those options are still plentiful. Feel free to comment on Facebook, Twitter, or to e-mail me personally. I am also starting a topic specifically in regards to this series of posts over at the community. Feel free to head over there if you have something you would like to say and would like to engage in any discussion that may follow.