Saturday, August 29, 2015

My story is important too

Recently I was introduced to a reporter for a nationally published women's magazine who is planning to write a story on women who battled infertility but end their journey without children. She wanted to profile a few women in her story and was reaching out to a few people.  I'll be honest, I was scared shitless when I sent her the small blurb about our story and a couple of pictures of myself because, let's face it, if chosen I would go from being relatively anonymous in an obscure corner of the blogosphere to having my name and possibly picture published in a national women's magazine.  But I thought to myself "announcing" my infertility in a national publication would be pretty badass.

The reporter was very upfront that she was gathering blurbs from multiple women and then she planned to take everything to her editor and decide how to proceed from there and that sending her a short blurb was by no means a guarantee that my story would be published.  I knew from the beginning that my story was a long shot to be published. I wasn't chosen to be profiled.  To be clear, I'm not upset or hurt, not even a little bit.  And I'm not surprised.   Lets face it, the goal of a women's magazine is to sell issues, and sensational headlines sell magazines.  Mine headline isn't sensational at all.  In fact, "Infertile Woman Doesn't Pursue Treatment But Still Grieves That She Will Never Have Children" is probably a headline better suited for The Onion than a women's magazine.

Catchy headline or not, I think my story is important to share.  I think that there are a whole lot of women (couples) that fall into the same category as me (and my husband), couples who are infertile but don't or can't seek treatment.  For us there wasn't any one particular reason that we didn't do IVF.  It just felt like the right decision for us.  We went as far as we were willing to go and were willing to accept any consequences as a result of our decision.  We were on the same page from the start.  There wasn't even much discussion.  We just knew it wasn't for us.  This isn't to say it wasn't hard because it was gut wrenching.

Other couples have religious objections to IVF.  Catholicism comes immediately to mind.  Others have ethical issues with IVF.  What to do with any frozen embryos is a question that many are faced with.  Gender screening.  Genetic testing. It's a whole can of worms.  There are no easy answers and there are no universally correct answers.  The right answer is what is right for the couple.

For many couples, the cost of IVF is insurmountable.  Not everybody of reproductive age has a spare $15-20 grand laying around to pay for a medical treatment that, best case, has a 70% failure rate.  In fact I would guess that many people don't have that much laying around without tapping into home equity or retirement.  I'll never forget after we received our infertility diagnosis we were ushered into a room to talk to the IVF nurse and then to another room to talk with the financial manager (notice how I said ushered, at no point were we asked if we wanted to talk to these people, but we were reeling from the news we'd just received and couldn't say no).  The finance manager was talking about paying for IVF and gave us a brochure about financing IVF through a specific company.  Since my sarcasm often comes out at times such as these I remember saying something to the effect of "yeah, that's probably at a 25% interest rate too" to which the finance manager replied "actually I think it's only around 22%."  Now I'm no economist or accountant but that sure seems like predatory lending to me.

But the point is that there are a lot of people who don't or can't pursue advanced fertility treatments.  It doesn't mean that the couple didn't try hard enough.  It doesn't mean that they didn't want it bad enough.  It doesn't mean that it was God's will.  Or that they wouldn't have made great parents.  They are good enough.  They did want it enough.  They would have been awesome parents.  And God (if such a being actually exists) doesn't have a damn thing to do with fertility (or infertility).

At the end of the day I'm grateful to have been given the opportunity to correspond with the reporter.  Doing so took me far out of my comfort zone.  But you know what?  The sky didn't fall.  The training wheels came off of the bike and I didn't wreck.  I grew.  I don't know what this means going forward. On one hand I feel like maybe I have found my voice (or at least my confidence) but on the other hand I don't think I'm ready for an infertility coming out party.  But what I know for certain is that my story is important too.

10 comments:

  1. Can't believe - they make you talk to the financial manager! Horrible.

    Yes, your story is important too. I enjoy reading it. Thank you for sharing it.

    wishing you a lovely Sunday. I am just off for a long walk with Wolfie, in our favorite forest.

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    1. Klara, even thinking back on it, that whole experience was just so surreal, and not in a good way, none of it. I think that the IVF nurse and the financial guy were just part of the cycle they run everybody through but it was just so impersonal and didn't take into account our thoughts or feelings. First step doctor, second step counselor would have been much more appropriate.

      Have a fabulous walk!

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  2. Every couple is different and what is right for one may not be for another. Whatever you and your husband chose to do, your story is important, you still grieve for that lost possibility of children and it is still gut wrenching. And it still upsets you from time to time.

    When a clinic decides the next route for you (like what happened with yours - seeing the ivf nurse and then seeing the finance manager), I would not only be mad but never deal with them again. It's very rude they didn't even give you time to process the information you had just been given and let you decide on your own when you were ready. It makes me think the clinic was more interested in making money than your welfare.

    I'm glad you were brave enough to send your story in, picked or not, that was a very brave step forward.

    D and I are lucky I guess in that respect in that we've been saving since we got engaged (a long time ago) so we are able to afford ivf and it helps that our health system reimburses a portion of the cost back. If they didn't, I think it would have been impossible for us to continue more than once.

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    1. Exactly, to everything you said. And we didn't deal with them again. I think that on some level when we walked out the door of the clinic that we'd never be back, to that clinic or any other. I know for sure that they were much more interested in our money than us. Simply put we were a dollar sign.

      It was also insulting to just be ushered to the finance guy with no conversation about our finances. We probably could have done one cycle, but frankly we didn't feel like it was an investment that was likely to pay off (all of the research I did showed that our IVF chances were somewhere in the 5% range, which for us wasn't enough to plop $25,000 down on the table which was our estimate since I would have been on an extended protocol and high dose drugs). Also, the notion of a 20something percent interest rate pissed me off too, one because that is highway robbery, but second because not a year before our credit qualified us for the best tier of financing for a car loan, 2.35%, and our financial situation improved from that time to the RE's office.

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  3. You are so right, and you are definitely not alone. IVF was certainly offered to us right off the bat as having better odds, particularly at my advanced age (39 at the time we started treatments), but at a minimum $6,000 a pop, we opted for the gradual & cheaper approach, lol: I did a couple of cycles strictly on clomid, then we did three rounds of IUIs with injectable drugs. That was enough for me. After #3 failed, I was a physical, emotional & mental wreck -- having panic attacks, etc. IVF was the next logical step, but I just didn't think I could handle it. Beyond the fact that I was a wreck, I had no confidence that it would work, and I felt like we'd already poured enough money down the drain.

    Our stories may not include IVF or donor eggs or a failed adoption -- but they are real & painful and common, and definitely part of the spectrum of infertility experiences.

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    1. Exactly! It's a spectrum, not a a predefined order. I appreciate you sharing your story too! I also worried about what effect the drugs would have on me, and I suspect it would be similar to what you experienced. We (well me more so than hubs) were prepared to go the IUI route, but it wasn't appropriate in our case because the chances of success weren't any higher than the old fashioned way, but IVF was out for us from the beginning, and our decision would have been the same even if we had insurance to cover the cost.

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  4. I really love this post. Yes, your story matters too. I always say that we all our own limits for our own reasons, they're different for everybody, and no-one should ever judge anyone else for having different limits. I do hope the article will include people who didn't pursue treatments, and look at all the reasons why, as you have so well-articulated here.

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    1. I hope it will include a variety of infertility stories, too. The spectrum of stories, not just those who went through fertility treatments. I actually had a different draft of this post going, one that was quite a bit more dense and research heavy, but I decided that post didn't portray the message I wanted to get across. Maybe I'll finish and publish it at some point. But in summary, what I found was that if you are white and straight you are 3x more likely to seek treatment for infertility than any other group of women and also if you are a minority and/or poor you're pretty much screwed.

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  5. How horrible. I am so sorry you had to go through this.

    You are definitely not alone. We stopped after an operation, four circles of "hormones only" and three IUIs. That's what our insurance paid for. When they started talking about IVF, we already knew we could not go further. My mental health simply would not allow it. Even five months after drawing our line in the sand, I have sleeping problems. My main goal is getting the life and health back I had before starting it all. It may only be possible to some extent, but any step towards an enjoyable life is a success.

    So yes, you are important. To me and to so many women out there that may not comment here, but be grateful to read what you wrote.

    Thank you!
    Isabel

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    1. Isabel,
      I'm so sorry you had to go through this too! It's just plain hard, this grieving thing. This is a great community with a good mix of people who are deep in the throes of grief as well as those who have already done the hard grief work and share their wisdom with the rest of us. In fact, Mali wrote a post today titled "there are no shortcuts to healing" which is a must read.

      Thanks for reading and commenting! I hope you continue to read, not because I'm wise or have it all figured out, but because sometimes just having the knowledge that there is at least one other person on the face of the earth who has gone through this too makes it feel less lonely.

      xo,
      K

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