Wednesday, September 26, 2012

The one where I get bitchy

This is going to be a long one. I apologize in advance for the brain-dump, but I need to get this out.

January 25, 2011. Four days after Grey and I officially began our infertility workup, we attended the first class for Ali Domar's mind/body program. I have some great things to say about Dr. Domar's work with the mind/body connection and infertility. I also have a lot of good things to say about Carol Knoph, the instructor for this class in the Seattle area. Certainly a topic I want to cover more in a future post.

What was interesting about this group for me was it was the first group of women I was finding in real life who were also struggling with infertility. Though nervous, I was also at ease with the idea of being around others who "got it," who understood what it meant to live with the grief and pain of this horrible disease and how isolating it is. I fully expected that this group would be a source of support. Little did I know how wrong I was.

Before I go any further, I need to point out that I don't have anything against group therapy. With the right leadership and appropriate rules, it can be a wonderful experience and RESOLVE runs many fantastic support groups. The thing is though, every group NEEDS someone to mediate. It needs to adhere to established ground rules and goals. Because without those, it's easy for one person to take over, absorbing all the energy in the room and making it a venue for them to air all their BS without actually dealing with it. And once that happens, it's all downhill from there.

Our group leech was a woman named Angie. Angie and her husband were trying to conceive for 2 yrs with no success, other than a suspected chemical pregnancy. Angie had PCOS. Angie also had a host of emotional issues and could easily spend the entire 2 hrs talking about every woe in her life from the time she was born. Angie was also the first person I met to undergo IVF. Like everyone else, I was supportive. I was very happy for her when we learned about her BFP and then the news of twins. But where things started to go south was after the course ended and we started meeting independent of Carol. It quickly became clear that she lacked empathy for others in the group and with a lack of leadership, those sessions turned into Angie therapy session. Instead of focus on mind/body, the attention shifted to how miserable she was as a person. She would complain obsessively about pregnancy symptoms despite the fact that another group member was grieving a failed cycle. When called out on how hurtful she was being, she immediately pulled the "but I'm infertile too" line and threaten to banish herself in hopes of more support. The final straw for me was hearing about her rubbing her very pregnant belly and whining about having to support 2 babies at a meeting while a another member, Beth, was going through a miscarriage. Needless to say, I stopped attending group meetings immediately.

Angie wasn't my only example of an infertile with amnesia. Before, during and after Beth's failed cycle, I spent a lot of time supporting her. I cheered for her with the news of the BFP, prayed like crazy when the betas weren't climbing and spent a lot of time being available for her to vent. I even knitted her a pair of fertility socks for her pending January FET. All this during the time that my IUI cycles failed and my family was cut off. In November, I received a "surprise" pregnancy announcement from her, stating that she had undergone a FET and didn't tell anyone. At the time, I swallowed my shock and pain, determined to be happy for her and reasoning that she needed to do what was best for her and her husband. Still, being blindsided hurt. When I learned my first IVF cycle was ending in miscarriage, I contacted the other members of the group hoping for support as I was reeling from the news. Though a couple emailed me back, insisting that I attend that evenings meeting so they could offer support, in general the rest were silent. Then I got an email from Beth.
I'm so sorry!  This whole thing is so hard.  I know that talking to XX was helpful for me.  (She is a counselor who specializes in fertility struggles.)  Take all the time you need to mourn and heal.

I do have to say that the FET cycle is SOOOO much easier than an IVF cycle.  There are not nearly as many drugs, so it is just a much easier process.  You can time things out to accommodate your schedule. I know that seems far away at the moment, but it may give you some hope in this difficult time.  
Needless to say, I cried after getting this email. I felt so belittled and betrayed with the response about me losing my pregnancy. It felt like it didn't matter.

I need to reiterate what I said in my previous post: I am not a fan of the pain olympics nor of people one upping one another. I also don't believe that support should be less for someone if they are able to become pregnant nor should they be attacked. We're a community, damnit. We should be supporting one another through the good times as well as the bad.

But I do believe that if you walk this road for any amount of time, you have a duty to remember those who are in the trenches. I'm not suggesting that you become a champion for every person suffering from pregnancy loss and infertility, but if you were supported by others, be they here or online, you owe it to them to reciprocate that support.

Mel once asked if it is appropriate to hold an ALIer responsible for insensitive comments or actions. Honestly, I do. I get that there are days where we'll make mistakes and say/do something that is completely insensitive (hell, I do it all the time), but I also believe that to develop amnesia is to have a double-standard and selfish. To say or do something that would have been incredibly painful for you and then become defensive about your actions makes me see red.

Following my second miscarriage in April, I wanted to die. There were many days following the news where I prayed I wouldn't wake up to this hell. I felt so betrayed by my body, the universe and the world in general. Looking back now, I see how dire the situation was and am completely amazed that neither Grey or I lost our minds. What added to the hurt was being isolated. So few reached out to us, assuming instead that giving us space was the best course of action. Even as it became clear it wasn't. The ones who did reach out were those I've met through this community, with posts, emails, comments, texts and socks keeping both Grey and I afloat. For that I am eternally grateful.

The few resolving IFers I knew in real life pulled away, leaving us alone during our darkest hour.

What's sparking all of this is a letter that I received letter from one of these IFers. An apology of sorts. And I'll be honest, I don't know what to do. I understand she's trying to reach out, trying to figure out a way to be supportive now. But with that letter came the memories of April. All the pain, the fear and the hollowness. The memory of death. But most importantly came the anger for feeling abandoned. For feeling like I was used, with my only purpose serving as a cheerleader but that my pain didn't matter. And as much as I don't want to be the bitter infertile, it's hard to look at the enclosed birth announcement and not think "why did my babies have to die?"

Tonight I'm hurting. I'm hurting because I don't want to be this way. I'm hurting because of the guilt I'm feeling. I'm hurting because of the raw emotions that have emerged.

I'm hurting because I know now that I deserved better.

I don't wish any of these women to still be in the trenches instead of holding their children. Nor do I think any of them are less deserving, despite the fact that I think one of them has some serious emotional problems. But I do expect that they would know how fucking important it is to reach back, to offer support and to be aware that isolation and platitudes are the worst response to anyone who is grieving. To not become what was such a source of pain.



26 comments:

  1. I think people find it difficult to tread the line once they are able to conceive. Some are great at being careful and reaching out to others, and some just...forget. I'm sorry that your in-town support group failed to be there for you.

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  2. Christy, this is a beautiful and emotional post and kudos to you for writing about a difficult topic. I have experienced this myself and it hurts to the very core. Thinking of you, especially on these tough days!

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  3. As someone who has "crossed over" I think this is a wonderful post. I have not forgotten, nor do I think I ever will. There are some who feel since I have a child I should just move on from IF and the ALI community. I don't think like that. These people supported me in my darkest hours and I want to be there for them....I think Beth's email,would have been fine if she hadn't added that little extra part about the FET process. Although I agree the FET process is waaaay easier than a fresh cycle, this was not an appropriate time to share that info....

    I am so sorry for your losses and your hurt and guilty feelings. IF makes us feel guilty for the stupidest things....I am so sorry this brought all those feelings back to you. Allow yourself to be angry and hurt. You were abandoned. But please realize there are still some of us who didn't forget and are here for you even if it's only online. {{{HUGS}}}

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  4. PS you're not bitchy....just open and honest and bringing awareness to the forefront....

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  5. This is a fantastic post which I don't think is bitchy at all. It's an important topic of conversation. It is too bad that woman ruined what should have been a wonderful experience for you and the others in the group.

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  6. This is a really important topic that desperately needs addressing. Thank you for being so bold and taking the lead.

    I have a once very close friend IRL who also struggled with infertility. As soon as she became pregnant with her second child, though, she seemed to forget everything. Gone is my rock solid support. Gone is my friend. The couple does not even invite us over for cookouts any more. I feel like I have a scarlet I on my chest and that because of this I have been cast out of her life.

    All this to say - I understand why you are so upset. You, more than many in this community, are a constant and unwavering source of support. You inspire me to be a better blogger and a better IRL friend. Your self-less support of others is a real gift, one that many people are lacking. I'm so sorry those who supported you have wavered. I wish I had great words of wisdom on how to stand up to them, but I don't. Do know that you and Grey are in my thoughts daily. While I may not always have the perfect words of support I am always thinking of you.

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  7. What a wonderful post. Although I have some different beliefs about the woman who get pregnant and completely forget about the infertile woman that helped them through some of the darkest hours, I love your perspective of the situation. It is so damn hard.

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  8. This is something that's been on my mind a lot lately, but I was just too afraid to post about it, so thank you for saying something.

    When I started this journey, I was a part of the Single Mothers By Choice community. When I found love and got married, I didn't forget or abandon the wonderful women I'd come to know in the SMC community because 1) I didn't forget how difficult and lonely it was to try to conceive alone and 2) I genuinely cared about these women and wanted to continue to be there for them. And until they tell me to get lost, I'm going to continue to be there for them. So it's hard for me to understand this amnesia that comes over women who resolve.

    Although I haven't experienced the level of abandonment and insensitivity that you have, I've definitely had moments where I've felt abandoned by infertiles who have resolved. People that once gave me support suddenly vanished once they became pregnant and gave birth, and their support shifted entirely to other mothers, even though I continued to support them and cheer them on. You definitely feel used and utterly expendable when that happens. And I'm bitter about it, too.

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  9. Cristy, I am so sorry that you didn't get the support you needed from those you thought would support you the most. As a former longtime (almost 10 years) facilitator for a pregnancy loss support group (which included many people with infertility issues), I can tell you we had to deal with a few Vangies over the years, and it wasn't fun. You noted that once you started meeting independent of the facilitator, things quickly went south -- and that's why the role of the facilitator is so important -- one person and their problems should not be consistently allowed to dominate the group. As facilitators, we would remind people of the "rules" from the outset -- that we wanted everyone who wanted to speak to have the opportunity to do so, and we might have to intervene and move things along if we felt that wasn't happening. We would sometimes suggest private counselling for people whose problems seemed too complex for us to handle, or who were taking up more than their fair share of time. (We also had a separate group for members who became subsequently pregnant -- they were welcome to return to the original group after having their baby, with the proviso that they focus their conversation on the baby that was lost.)

    I've also been on the receiving end of infertility/loss amnesia -- some real clunker statements from people who really, really should have known better. I don't think we're expecting too much either. (((hugs)))

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  10. J told me last night how a co-worker brought in her twins. She was still on maternity leave and wanted to show off the kids. J was upset by it. I asked if she knew he and I were infertile and he said YES. While I want to be happy for his co-worker it bothers me that she knew and didn't care how he felt.

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    1. I'm okay with people bringing their kids to work (supervision is important of course). I think the best course of action is having him talk with her about giving him a heads up. That way if it's hard for him, he knows ahead of time.

      The thing is, I expect this of people. Having children is a life-changing event. What I don't like is feeling minimized and abandoned by those who were suppose to be my support system. I understand not wanting to hurt someone, but when you've lived with that pain and know how tragic it is to be alone with it, I have a very hard time when you develop amnesia.

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  11. So sorry you are feeling this way Cristy. This is such a tough journey no matter where you are in it and I value this community so much and you have always been there for me and I wish I had words to explain how appreciative I am for it. You are such a strong woman and although some may not show it all the time or in the right way, I would imagine there are so many of us that look to you with admiration...hoping today is a little bit better for you

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  12. First time poster here so I'm a little nervous. In my life I have hurt and been hurt. In my life I have apologized and have been apologized too. At what point in our lives when we've been wrong and apologized to do we move on? I don't mean forget, but move forward? I can't begin to say I understand this woman's intent when she wrote her email of 'support' when you had your loss nor her intent when she reached out to apologize for not supporting you back then. But it seems like this was a no win situation for anyone with her most recent communication - you or her. As a therapist, and knowing that this woman could not undo her reaction back then...what would a therapist have suggested this woman behaved in the now to you if she really felt genuinely bad and regretful for her reaction back then? I only ask because in my life I had done stupid things and I'm sure I didn't support someone in a way that they would have wanted either from ignorance or just being stupid...but once it has happened, is there a way to ever recover from your mistep with the one you've hurt? I wish you well and most of all I'm sorry you are hurt and have so much pain. I too have been 'supported' in a way that was not what I needed with my infertility but I have had to in my life tell people how best to support me when they mistep. I hate that I have to teach people these things but I accept that I need to sometimes, even those who have crossed over to have their take home baby. Thanks for being so open here and I don't take it for granted that you are being so open with your thoughts and feelings. Thank you.

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    1. This is what I was hoping for. Thank you so much for posting this. I'm glad you did.

      What you're hitting on is a willingness to forgive, a willingness to salvage the relationship. For me, if the person is truly sorry and is making an effort to repair the relationship, then the ball is in the offended's court. If they chose to not accept the apology and move forward, then the relationship dies. BUT the one who has apologized is no longer the cause. The "crimes" of the past can no longer be used against them.

      We all make mistakes or misspeak in life. I do it constantly and find myself apologizing more often than not. What I'm talking about here are people who don't apologize; who see nothing wrong with their actions. Vangie is a hopeless case. Believe me, we tried. Beth was harder as there were moments I believed she could understand. But with multiple back-to-back blows followed by a shear lack of sympathy, repairing that relationship was furthest from my mind while I was miscarrying.

      Long comment, short: apologize. Genuinely apologize. And then reassess. Sometimes the relationship has died and there is no recovering it. But sometimes a heart-felt apology, though painful for both parties, is the first step for moving forward beyond this.

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    2. One final clarification: Beth's email and the letter are not linked. I never heard from Beth again after that email. There was never an attempt to rectify. The letter is from another IFer. One that I need to act on soon.

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  13. Thanks Cristy for replying to my nervous first time post. I really appreciated your insight on the debate I started with myself from your post above. I don't know if you realized that sometimes when I read your posts not only do I learn a bit about your life but I learn a bit more about myself too. It stinks that it has to come at your expense from an experience such as this.

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  14. Thank you for posting this. I too have felt really weird about finally having success after 2.5 years of failure... It is truly hard not to feel guilty some days. I totally agree with SLESE1014's post. I don't want to let go of the people that supported me through all of this - I want to be there to support them too. I have two good friends (non-bloggers) going through IVF - one medicated for abnormal NK cells, the other, going through a 2nd full cycle IVF attempt. I've been there for them throughout and try to play down my happiness about my pregnancy when I talk to them (and only give my news if they ask for it). My hub and I also made the decision to not post anything about the pregnancy on facebook because we know that there will be people who are desperately struggling like we did. Thank you, as always, for your honesty and amazing writing. You say all the things that we all wish we could say, but can't quite put into words.

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  15. I'm at the beach and keep getting kicked off-line, but wanted you to know I read your post and am sending my love. I know how you feel completely and think you really hit the nail on the head. I'm thinking of you friend.

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  16. I have a real hard time understanding the lack of empathy and clueless actions/comments people make when they too have struggled with infertility. I'm sure I have made a few blunders myself.. we area all human. But the behaviour you describe here is just too much. I'm so sorry you are hurting from it and the memories they have brought up, when it should be a source of support.

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  17. I love this post! Even though my time in the infertiliy trenches are in my past and I am so blessed to have two children (one boy thru a long and painful IVF process...the other a beautiful girl through the selfless donation of embryos from another couple)....the pain and isolation and fear have not been forgotten. I purposefully still read mostly infertility blogs to offer up hope for those still on the path and to never forget how hard we worked to make our family. I never want to fall into the category of people who say and do insensitive things as they pertain to infertility. I soooo get your post today. I was so fortunata after my miscarriage to have a handful of friends who didnt' give a damn what I said about needing time...they showed up anyway....somehow they knew I needed them and they were not IFers, just good friends..... I was so proud of them. I want to be THAT friend. I think that is what this all boils down to....whether you have been there or not...be a good friend. Period! I hope your post resonates with this community. I am not a blogger....I am sad to say I pretty much suffered alone on my journey and did not find the blogging community until my 2nd pregnancy when we decided to go for embryo adoption....that is when I started googling and stumbled upon this great community of women. I have seen some really hurtful stories and am always so shocked people would act this way....I will say it again...it all comes down to being a good friend. kd

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  18. I know I have def been guilty of saying the wrong thing, but I hope to never have amnesia. This is an amazing post. I'm so glad you wrote it.

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  19. I think insensitive/ignorant comments are almost expected from those who haven't experienced loss or infertility, which is why it hurts so much more when they come from someone we think should know better. I can't imagine ever forgetting the experiences we're going through now, and I hope to always be a souce of support for those who continue to struggle, no matter how our journey through infertility ends.

    I think you're right--recognizing that you've said or done something stupid/insensitive is the first step to healing the relationship. If you can't do that, I don't know what hope there is to repair the damage that's been done.

    I'm sorry you're having to relive all of the pain of your loss in April now. Sending hugs.

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  20. Cristy, I am very sorry about the insult to injury that is happening here. And I really have to commend you on writing and publishing this post. I too, have been treated *terribly* IRL by the only other person I know struggling with IF. Consistently, and over time. Which is to say, not a lashing out that can be confused with a "dark time." More like a person who is hellbent on winning gold in all the events at the Pain Olympics. And it made me refuse to talk to *anyone* about this journey until I found the ALI community, and even then, it makes me wary.

    I think that it was brave for you to put this out there (and your previous post regarding the Pain Olympics) because I think there is a belief that all ALIers arw capable of unconditional support for each other, and that just isn't always true. (Although, I find this to be true in leaps and bounds above IFers IRL, perhaps because we can choose our support groups more carefully? I'm not sure). I *do not* mean that sometimes we say or do the wrong thing in an effort to be ultimately be supportive. And I *do not* mean that sometimes we need to pull away to protect ourselves. I mean that walking this road doesn't also mean that a person can't also just be an asshole, for whatever the reason (amnesia, Pain Olympics, plain old asshole, etc). It *hurts* when it comes from our friends and family, but it *BURNS* deep into the flesh when it comes from another IFer. I am so, so sorry that that happened to you.

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  21. I'm really sorry you've been through this. I think those of us who don't have quick (or any) resolution of our infertility can all relate to this. Over ten years I've been in the infertility/loss community online (though only recently blogging) and I have seen people behave exactly the way they would have deplored only six months earlier. Memories are short, it seems. Even amongst those who like to think that they are "aware" of the issues, of our situations.

    At least the person who wrote the letter to you understands (perhaps) that she made you feel abandonned. So perhaps, instead of replying and saying (as we do so often) "it's okay" I'd explain to her that whilst you appreciate her apology/reaching out, you really did feel abandonned, ignored, after everything you had done to support others. And that you're feeling a bit fragile. If she's a true friend, she'll suck that up and understand. If she's defensive - then you haven't lost anything anyway.

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    1. I like Mali's suggestion of a way to respond to your friend's letter. I don't know, though...maybe receiving support from a new mom isn't the best thing for your right now, anyway?

      I'm so sorry you're hurting, and that so many people are not providing the support you've given them. That's probably because I'm sure you're such a good friend IRL, and others just don't have your level of sensitivity, empathy...capacity for being a good friend, etc.

      I went to IF group therapy in spring 2011, too. Last fall after m/c #2, I went to one meeting of a loss group. One woman was struggling with a very recent late-term loss and really dominated the discussion. I didn't return to the group--the facilitating wasn't what I'd hoped for. And after my IF group started meeting w/out the facilitator, the dynamic did change a lot. Ok, that was a ramble.

      So yeah. Resolved IFers who develop amnesia are confusing--how do you not remember what it was like in the trenches?

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  22. As always, thanks for your insight and for being an advocate for all of us. You are awesome.

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