Saturday, 18 August 2012

Stop! I want to get off!


“I want to get off the roller coaster!”  I’ve heard that a lot in the infertility community.  The roller coaster of emotions around infertility and loss is tough to deal with.  We have highs, when we get good news, have a good hormonal rush, feel flooded with hope, or get that big fat positive pregnancy test result.  But we also have the deep lows, as if we’re on a roller coaster plummeting to our deaths, when we get bad test results, the IVF cycle fails, or we’re diagnosed with an ectopic pregnancy, or the baby doesn’t arrive, alive and healthy, as we had hoped or expected.  I’ve experienced this roller coaster, and it’s not a lot of fun.

Once we’re on it though, it’s not easy to get off.  Perhaps a better analogy is to talk about a treadmill.  This analogy worked for me.  When we first visited a fertility specialist, we were shocked at the suggestion that within three months we could be doing IVF.  But then came a second ectopic, and once healed from that I leapt onto the treatment treadmill, with tests and drugs and injections.  And even when there was failure, I didn’t get off, just programmed in another cycle.  After that failed, my fertility guy pulled the plug on the treadmill.  And I’m grateful that he did.  Because I could have kept going.  If there had been options, if New Zealand’s fertility industry wasn’t so regulated and we could have increased the drugs I was shooting up, if he had been less scrupulous about the money he could have continued to extract from me, I might have stayed on that treadmill, I might have increased the speed and the incline, moving into donor eggs, or I might have seamlessly switched across to the adoption treadmill beside it, without missing a stride.  I’m glad the treadmill came to an abrupt stop.  (OK, I could have done without the abruptness of it, as I hit the front of the treadmill and came away with bruises, a bad headache, and a spinning brain.)

But my point is that once you’re on the treadmill (or roller coaster) it is hard to get off.  Even if you want to get off, it’s really tough to slow it down and get off in a dignified way.  I have seen some people pour money into more and more IVF cycles, unable to stop.  And I can see how they did it.  I know the feeling.  It’s an addiction.  An addiction to a form of gambling.  Because that’s what IVF is, let’s face it.  A gamble.  If we poured the same money into slot machines, or on the blackjack table (my husband’s preferred game), our families and friends and society would be shocked, and urge us to call Gamblers’ Anonymous.  And yet they see us do it with IVF.  For my husband and I, it was a risk worth taking.  We could afford it.  And we only tried twice.  But there are infertile couples who gamble their life savings on an IVF cycle.  Some will go into debt simply for the chance to conceive.  And then there’s the emotional cost.  We gamble with our peace of mind, our sanity, our relationships.  And you know, I think that’s sad. 

I think it’s sad on so many levels.  I think it’s sad that some people can get pregnant at the drop of the hat, and others of us have to spend our life savings and risk our health simply for the chance to do so.  I think it is sad that we can get so caught up on the treadmill that we just feel we have to keep on running, that we feel if we stop we’ll fall and never get up again.  I think that it is sad that it gets to a stage where we might be motivated by fear to keep running on that treadmill, running away from a future we are afraid of, whereas we first got on it because we were running towards something. 

I think it’s sad that we might feel pressure from others to stay on the treadmill.  I've been on the end of this pressure.  And I’ve seen it exerted on others.  I’ve recently seen someone come to the end of their treatments, unable to afford anymore.  And yet I’ve seen their internet friends pressure them to continue, suggesting cheaper options (such as IVF tourism, or IUI over IVF) even though this too is beyond their financial (or emotional) reach.  Because the ALI friends are on the treadmill too.  And they’re running, running hard, and they want company as they run, and they don’t want to contemplate any of their number getting off, because they only want to see the finish line, the holy grail, they don't want to see the tripping and falling, and they are incapable of seeing the relief and peace that is possible afterwards.  I think that’s sad too.

And finally, I think it is sad that I am worried about posting this, that I am worried about the reaction to the suggestion that we should dare to question whether it is right to continue to gamble on finding a solution to our infertility.  Yet I’ve said it because I think it needed to be said.  

30 comments:

  1. Years ago a friend went through three failed IVF cycles. The last resulting in an ectopic pregnancy. Though my friend was younger than me by some seven years, I had not yet felt that desperate ticking of the biological clock. I assumed there was time and I would have kids at some point. But, I also remember thinking that I would not do IVF. I didn't feel comfortable with the idea of injecting all these hormones into my body. I didn't feel comfortable with the outrageous cost and the fact that there were no guarantees. Then it turned out that we were an infertile couple. My partner was opposed to us using donor sperm, and so we did nothing.... I do not know what his SA results were, as he knew about this issue before we met, but does not like to talk about it. I know there are all sorts of treatments and procedures that men also undergo, but he is not willing to undergo any testing, treatments, etc. He had some treatment many, many years ago and they did not work. I wish I had held on to that former sense of certainty that I would never want to hop on to the RT wagon because now I often feel fearful that I will regret never attempting any treatment at all.

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  2. U put what u said very very well!!!!! I feel like I could have written the same things about the roller coaster!!!!

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  3. Now, THAT is a great analogy! Wonderful post.

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  4. I understand what you are saying. I worry sometimes about so many people always encouraging, "I just know this will be your time," etc. I can't in good conscience say that to anyone. I have not gone through nearly what some have endured but I know that I can not go much further one way or the other. I'm glad I am not the only one who realizes that it is all a gamble.

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  5. I'm glad you posted. It's funny because I wrote about this recently and used the same analogy. I felt my husband and I were on a treadmill leading nowhere. We didn't try multiple IVF cycles but we tried other options: surgery, international adoption, acupuncture. IVF was for us a last resort and when the first cycle was cancelled I just didn't feel I could do anymore. We were seven years into trying at that point. I do wish there was more empathy and support for couples who decide to stop. It was one of the most difficult decisions we ever made.

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  6. People like hope. We don't like "giving up hope," and the ones who love us encourage to "keep hope." Sometimes, i think, people stay in the craziness because they are caught, but also because not to is to face a reality without hope for a child.

    Frankly, we have parenting guides, and career guides, and diet guides, and life coaches, and marriage enrichment, and even some books on dealing with grief. But most of the "guide" or "how to" books are focused on positive futures and outcomes. There isn't much written about giving up one dream or hope, and learning to focus on a future very different from what was planned. There isn't a good "guide" to follow for giving up hope, partly because it is so very individual that we are creating our own paths.

    Very well written, Mali. Thank you.

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  7. While we didn't go the fertility treatment route, we had the same treadmill problem with adoption. We finally hit stop - and life is a little easier now.

    But, others just don't understand. I know had we stayed on the adoption route long enough, a child would have come here, but our hearts were damaged - and it just didn't feel right anymore. Sometimes it is better to listen to your heart I suppose...

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    1. That is how I felt too. If we kept going and trying every single option we may have a child; but I had been stretched so far I felt there would be nothing left of me to give.

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  8. It's so hard to find that stopping point...

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  9. dear Mali,
    beautiful post! I just wish I could read it sooner!
    Yes, IVF is an addiction. It is gambling. And yes, I was addicted!
    I tried 9 IVFs + 1 cycle with egg donation, abroad.
    And I stopped only at the 10th try ... when my body was having terrible reaction (swelling, I gained 5 kilos within few days... all water). I was literally afraid I might die because of all strange side affects that infertility drugs had.

    After 6 months my body went back to normal. And I am so grateful & happy for that... that I do not think any more about playing with my health.

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  10. Thanks so much for writing this.

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  11. Completely agree, I think I touched on some aspects of this recently (the gamble, the uncertainty, the cost - on so many levels)
    Similar to irisD - not actually that long ago I remember saying "I never want to do IVF, putting all those unnatural drugs in me and messing with nature". then the translocation got diagnosed and all of a sudden ivf was the recomnmended treatment option and there I was, going along with it all but thinking "wtf am I doing? So fickle!". Also knew that I didn't want to regret anything I didn't do or didn't try, and I feel that I would have always wondered if IVF would give us the child(ren) we wanted. If it didn't work, at least I knew.
    Even if it were financially viable to do cycle after cycle, I don't know that I could (although I know thats easy to say under these financial circumstances!), I wrote recently about actually feeling kind of lucky for not having the financial option to carry on after public funding runs out, because there is a definite cut-off point for us.

    "that I am worried about the reaction to the suggestion that we should dare to question whether it is right to continue to gamble on finding a solution to our infertility"

    'Rightness' means different things to different people. I think its a question we all need to ask ourselves anyway, even if the answer changes a couple of times as do our circumstances. Differing levels of comfort with the treatments too, I guess.

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    1. You've got it. What is "right" isn't universally the same for us all. And just as we need to know what is right for us, we need to respect others decisions too.

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  12. I also think that infertile couples fall prey to the totally unprincipled IVF Doctors, who see only couples as money-making tools, and pressure them to keep them going, in order to keep making money. They have no concerns about what kind of parents the couple would be, or how much money they can afford to spend without going into debt for the rest of their lives, etc...
    They forget to tell couples that children are a gift to be welcomed, not a right...

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    1. Who tells fertile people who conceive easily that children are not a right? I think you're on very shaky ground suggesting different treatment for infertile couples, suggesting that doctors should make judgements on who would be good parents and who wouldn't.

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  13. A very good post. I appreciate this, it's good to see a logical, rational, objective voice on this topic. :) especially about the financial stuff - I think of it as a gamble as well, one that I'm just not willing to take out a massive, probably unserviceable loan for.

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  14. so so beautifully written...so full of heart...'beyond emotional reach'...and I battle to accept that in myself...'motivated by fear' in every direction...i have been reading your blog for a while and your wisdom and compassion are a balm to my persistent anxiety...thank you for posting this, for your courage in posting this...

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    1. I am honoured my words help you.

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  15. I had to get off the treadmill for emotional reasons, not financial. I have excellent medical insurance, so we could have kept going. We had said we would try IVF 3 times (after having tried IUI twice), because our RE said for most people it will work within three attempts. We wanted to set a limit because we knew that if we didn't, it could go on forever. Emotionally, after my miscarriage (pregnancy resulting from the 3rd cycle), I couldn't go through it again. But even then, I still had my doubts as to whether or not we should have tried just one more time. I fear though, that the "just one more time" would have kept going and going. It was hard to get off the treadmill, but we would never heal from our loss of the baby and the loss of our dreams if we didn't stop and accept that it wasn't happening. Hope is a wonderful thing, but sometimes it stops you from beginning to heal and I needed to heal.

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  16. Great post Mali. Thank you for expressing these emotions so well.

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  17. I can understand your worry in posting this, but I'm glad you did. I agree with everything you said--the gambling analogy, the pressure from friends to keep getting treatments, etc. It is sad and I think sometimes people aren't seeing the long-term ramifications of their actions.

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    1. Watch this space - there's a scarier (for me) follow-up to this post coming.

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  18. Thank you for posting this. I have talked about riding the roller coaster a few times in my blog and it was so very difficult to get off. There are times that I would love to jump back on the ride because of rush of hope that I would get every time my husband would poke me with a needle, or the doctor would say that my lining looks great, there is no reason in the world this shouldn't work. I would be at an all time high, them boom, another failure, another BFN and I was crushed, yet again. We used one donor - we had three cycles with her and all three failed. I tried IUI and IVF with my own eggs as well...they all failed. It became an obsession....I wanted to keep going and if it wasn't for the fact that my marriage was really beginning to suffer as my husband was just done...I would have kept going. I am 44 years old now - have been off the roller coaster for a year now....it was a difficult thing to do, but though there are times I wonder if we should just try it 'one more time', I don't ever want to put my body through all that stress again or my marriage.

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  19. Well said. We tried IVF once, for the reason stated above...I didn't want to wonder "what if" years later. Then I had to stop reading some blogs where people mention that the first IVF is just an experiment with your body's reaction to the drugs, and the second one is where they perfect it. While I think there IS tweaking of the medications if the first one doesn't work, I don't think that is what the doctors are assuming. If it was, I doubt they would charge you the same price for both rounds.

    My in-laws even offered us more money to do IVF a second time, and we turned it down. We didn't want to go through anymore; we had decided on one try only and were ready to move on. We had already discussed what our life would be like if IVF didn't work, so once it didn't, we cried a lot, and then started planning a trip within a couple weeks of the notification that the embryos had stopped developing after a BFP days earlier.

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  20. I have been pondering over this post (and the next one) since I read it. Thought provoking but honest and true. I have just got a taste for how it feels when hitting my limits with treatments. When it gets too much and overwhelming. The hope of just one more try can really blind you. With that said, everyone is different and each person have to find their own limits in their situation. I'm glad you recognized what was right for you.

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  21. I worry about some stuff I post too - in fact, I self edit all the time.

    This was a great post for me, where I am right now. In fact I really dig your blog. So thanks.

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    1. Thank you. I'm always honored that people want to read my words. I appreciate it.

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  22. Actually one of the BIG reasons that we decided not to do "anything much" - we drew the limit to not even checking ourselves properly to find out what's wrong (if anything can be found out, that is) and just trying out some Chinese herbs - was because deep down, I was afraid I wouldn't be able to stop myself after stepping on the treadmill. I know myself pretty well (I think) and I know I can be obsessed once I'm focused on doing something and that could be my downfall and our marriage's downfall and that was the last thing I wanted.

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  23. Great post, Mali -- the gambling analogy is very apt. I always said I thought the odds were better that I'd win big in Vegas than conceive & carry a baby to term. :p I can also relate to the roller coaster/treadmill. I used to describe it as slippery slope, because it's so easy to suddenly find yourself doing things you never ever thought you would do & going further with treatment than you ever thought you'd go (because you never, ever thought you would HAVE to do these things if you wanted the remotest chance of having a baby).

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