Friday, June 14, 2013

View from an Infertile

I have been on a bit of a hiatus after my disappointing news after my last transfer. I spent quite a bit of the last year bitter. I got depressed when EVERYONE around me got pregnant. I blocked quite a bit of my facebook feed. I got to the point that when someone got pregnant in a show I liked I had to stop watching the show cause all I would think was "why not me?"

Then someone who regularly follows my blog asked "so what are you going to do differently so the next one doesn't fail?" I'd like to think it was meant in a way where it sounds like I sabotaged myself but that is not how it came off.

It was at this time that I started drafting this post. I gave myself a few weeks to settle down emotionally (both from the negative test and from the comment). I am a member of an online infertility support group. It is a group of women who are doing more than having sex to make a baby. It includes women charting cycles, taking meds, going through IUI and IVF. There are even a few on there adopting. I asked this group of women 4 questions these are their responses copy and pasted from the board (each color is a different poster).

What do you wish people knew about infertility?

It's a disease as defined by the world health organization.

I wish people knew that it is a disease and should be treated that way...if people really realized that, I think many of the stupid comments would cease to exist.

For example if an acquaintance/friend/relative just told you that they had some sort of life-altering illness (cancer, MS, lupus, etc.), most people would respond with something like, "oh, I am SO sorry to hear that! Please let me know if there is anything you need or if you ever just need to talk. I will be praying/thinking good thoughts for you!" ....end of story. No stupid advice, no insensitive comments, just sympathy and support. For some reason though, when the disease is infertility, people suddenly become "experts". Sorry, but if all you did to get a baby was have sex, I don't need your advice. I know how to have sex, thanks.

Same goes for a loss. If you had a family member recently pass away, people say the standard, "I'm sorry! Pleased let me know if there is anything you need, etc." But when you have a miscarriage all of a sudden it's God's will?? Somehow I don't see people saying it was just part of God's plan if a family member was killed in a car accident, but it's cool to say it if your unborn baby dies?? That's F'd up!

It is a real physical problem that is really expensive to attempt to correct with no guarantees.

Infertility isn't something that happens cause someone did something wrong. In my case I protected myself and my family by going on an IUD after having M and it destroyed my tubes. Even though I know it is irrational I blame myself for what we are going through now. There are others with unexplained infertility, male factor infertility, polycystic ovary syndrome and many other things that cause their infertility its something that happens naturally and is no ones fault.

How does infertility make you feel?

Hopeless.  Angry.  Less of a woman.  Numb. Scared.  Tired.  Sad.  Bitter.  Jealous.  Like it will never end.

You are in a cycle of perpetual grief.  You live with it every day, week, month and year, the grieving process restarts every new cycle as well as moves on as more time goes by, so really you are in a dual grief cycle that doesn't end.

I feel guilty a lot. I feel guilty for not wanting to hear about other people's pregnancies or babies. I also feel like a monster in other people's eyes for feeling ambivalent or, in some cases, angry. And desolate.

SAD. Almost all the time. There are other emotions in there at different times triggered by many things. But overwhelming sadness really has to top it for me. I have tried to deal with it by finding joy in other things when I can

Anxious. Sad. Jealous. Depressed. Embarrassed.

Anyway. How it makes me feel:  Broken

That I'm broken, angry, and guilty in a range of ways.

It is like a roller coaster that makes you sick after awhile, at the beginning it is so exciting the big hill that's nice and smooth but then the loops and turns start hitting. After every one you pray it is over but you don't know when the end is.
I posted the clip last post of the couple from UP when they found out they couldn't have babies. That is how I feel. Along with everything that is posted above mostly I feel Broken

What else do you think the general public needs to know?

There is no one right way to feel and to grieve, ever.  Don't diminish what we go through, it's real, it's not something one can move one from and get over.

I wish people knew that everyone is different, and it doesn't matter if your mom, sister, and/or aunt all popped out babies left and right, because you are not them. What affects one person may not affect another the same way.  For example, some people get pregnant easily with issues like PCOS, thyroid problems, high/low body fat, missing a tube, etc. while some people won't have any luck.  So, it doesn't matter if they know somebody who knows somebody who had the same problem and got pregnant - if you're infertile, you're infertile.

If some part of your body was not working properly (functioning abnormally), you would try to fix it, right? So, why is it that when it comes to reproductive malfunctioning nobody has any sympathy? I'd just like people to stop and think about what infertility really is: a malfunctioning biologically necessary system. Fertility is not a "luxury item".

Its a disease. No amount of tips or ticks will help. Not only that but insurance does not cover treatments. I think many people assume insurance will cover it.

I agree with everything said above. 

Along with hating the "God's will," I also really hate the "it wasn't the right time."  Seriously? I waited to get married and pregnant but its not the right time for me, but would be the right time if I was 16 and on drugs?

To be more sensitive.  They didn't adopt their children, don't suggest it to me.  Don't complain about your kids or tell me about you really don't want to get pregnant/are getting an abortion.  I'm seeing a medical specialist, I don't need your advice, just your support.

And for a little fun, what is the most ridiculous advise you have been given?

While it wasn't advice, the most infuriating thing that has been said to me was "have you ever thought that maybe God is trying to tell you something?" WTF?

I've gotten a lot of stupid advice.  Nothing too crazy, but the one that annoys me the most is, "Just stop trying.  That's when it will happen."  That one is just so cliche, and they obviously only say it because they have no clue what to say.  It isn't even logical.  To me, if you aren't preventing, you're trying.  It's impossible not to worry if you continue to not prevent and not get pregnant.  

I wish I had real zingers, but just the usual "just relax". Though after telling someone I was doing IVF, they still had the nerve to tell me it'll happen when I least expect it. Right, like after half a month if shots, egg retrieval, in-vitro fertilization, and then transfer. Right. How could I ever see that coming?

need to forget about it because thinking about it is somehow blocking it (huh?), then go to Hawaii and it will happen.    I guess it doesn't even matter what time of the month I go to Hawaii???

If dh stands me on my head after bd I will get knocked up.

The most annoying is after this past FET didn't work the comments about how many embryos we have left. "Oh its OK! You have 5 left!"

I think sometimes the stupid "advice" comes because people don't know what to say; it's not something they have been through. So I would prefer people to say something like, "I'm sorry you're going through this; I'll be thinking of you/praying for you; I hope it will happen soon; let me know if you need to talk" rather than "relax; it will happen when it's meant to/in God's time; I know it will work; have you tried xyz?"

For those of us suffering from secondary infertility, it is painfully obnoxious for us to hear that we "should be grateful for the child(ren) we have."  

  Not exactly advice, but when my cousin-in-law found out we were seeing an RE, he shared the following lovely life experience: "My ex and I were together for 5 years and trying the whole time and it didn't happen for us.Then we get divorced, we both remarry, and we're both pregnant within a year.  So these things happen for a reason."

"you already have kids, be happy for what you have, stop being so dramatic"....
And yea the "Maybe God doesn't want you to have any more kids" 
Yes, two separate actually said those things to me after a loss.
ETA: I also regularly hear people suggest getting a surrogate, as if I can just walk into a 7-11 and snag one for 11.99....

The worst saying I got was oh it only took you going on vacation... No  it took the meds prior to our vacation and just got lucky!

"At least you have 7 embryos left, you didn't want 7 babies anyway" * "Isn't IVF a bit much? It seems like a waste of money when trying is the fun part" * "Why can't you be happy with the one you have?" * "I can surrogate for you" (did you know surrogates are more expensive then IVF unless your going to sleep with my husband?) * "Maybe you aren't meant to have another" * "you can have one of mine" * "Why don't you just adopt?" (again usually costs as much as IVF and still doesn't guarantee a child) * "My (enter obscure relative here) tried for 6 years and they stopped trying and BAM pregnant"

Infertility seems to be a taboo subject to talk about. I honestly think the insensitive things we have heard come from a lack of knowledge, which is no 1 individuals fault.

The purpose of this post is to get the information out there. People who are going through this HUGE, life changing struggle want support, someone to listen to and someone who isn't going to downplay what they are going through because its "just not the right time"

Since starting this Blog in February I have had a few people email me to share their infertility struggle. As someone who has been in the beginning stages and with any luck will have her take home after IVF is done I want to throw it out there that if anyone is going through this struggle and want someone to talk shoot me an email. Be it to vent, get advise or support I'll answer as soon as I can.

There is also a facebook group called the "Infertility Justice League" that has support topics as well.

Just for easier reading the above posts have quite a few acronyms

bd= baby dance (sex)
df= dear fiance
dh= dear husband
PCOS= Polycystic ovary syndrome

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