Guide for Family/Friends

Infertility is such a lonely road.  People mean well when they give you advice or tell you stories of friend's of friends that adopted and then "poof."  They relate to you because it took them 4 wholes months to get pregnant.  "Why are you stressed and sad?  Just adopt?" has become a hateful echo in my head.  90% of the world is fertile, so 90% of people simply don't get it, and that is not their fault.

I never ever wanted to become an expert in infertility.  These crazy women talk in codes.  Before I knew it, I realized I could probably have my doctorate in infertility, how to get pregnant, and those crazy abbreviations. 

I never wanted to know what a D&C stood for but I found out in December.  BFN?  Ya, found that one out pretty quick too (Big Fat Negative). 



These are things I've collected to help you understand infertility and the craziness behind the scenes most of us can hide pretty well.  If you know anyone going through infertility (chances are you do even if you don't know), please read these short artifacts.  It will give you a glimpse.

1.  Perfect letter written by someone going through infertility.  I could have written it myself:

http://www.genea.com.au/Library/Been-trying-for-a-while-/Infertility/A-guide-for-family-and-friends/A-guide-for-family-and-friends


2.  Video.  What exactly is IVF??    I had a close family member actually think that ALL my life-long eggs were removed.  This video is 3 minutes but it tells you "what goes down" in an IVF cycle


3.  Infertility from a man's point of view blog post:
http://www.stevewiens.com/2013/03/26/ten-words-that-describe-infertility/ (I copied his post below and added my own thoughts in red

1. Lonely. We saw couple after couple get pregnant before us, our best friends included. When they told us, we high-fived them, then we went home, and hardly knew what to say to each other. We felt lost, sad, and even lonelier than before. We were excited for them; we were just very sad for us.
It’s okay to go home and cry your eyes out when your friends get pregnant.
What a rock and a hard place.  We so want to be happy for our friends, sisters, extended family, neighbors, x-students who are pumped to be parents.  Our smiles are genuine but they have no clue the firework of emotions and pain and emptiness this throws me into.  "Really sad for us" describes it perfectly.

2. Exposed. Everybody wants to give you advice, and some people say incredibly stupid things. My favorite: “You just need to stop trying so hard!” Some people want to know every excruciating detail of what you’re doing to get pregnant. Suddenly, your most private details are the subject of casual conversation. Once people know you’re trying, people want to know how it’s going, if you’ve done artificial insemination, if you’d consider IVF, and how it felt in that small white room with the gross leather chair & the bad magazines.
It’s okay to avoid the question, smile, and change the subject. Keep as many things private as you can (except to a few trusted friends).
This blog is a great place to be open, vulnerable, and truthful-but it's a secret.  It's easier to "expose" myself to strangers.  It's so true that it's weird people that know about our IVF date really KNOW the moment we "try."  When my sister got pregnant I did not ask her what time of the day, etc. 

3. On Hold. We were always checking the calendar, wondering if we should plan that vacation, or that work trip, because what if we’re pregnant? Then we stopped doing that, because we would have never lived if we would have scheduled everything around a “what if.”
It’s okay to miss a month or two; you have to live your life. This is hard, but over the long haul, it will create more stress if you feel so trapped that you can’t plan anything. We even found that it’s good to take a month off now and then.
This is dead one.  Last year, I almost didn't plan a trip with the students to Spain because I "just knew" I'd be pregnant by summer.  We've been wanting to go on a cruise, but I'm horrified-we have 2 unused IVFs in the future.  I don't want to be shooting up on vacation OR worse, puking my guts out because an IVF actually worked. 

4. Invaded. For women, there are so many things entering your body (probes, needles, drugs) and so many people measuring your progress. Even sex, at the mercy of a calendar or a temperature reading, can feel invasive. The loss of control can almost merge into a loss of self.  But, it feels like once you’ve started down this road, there’s no stopping until you get pregnant.
It’s okay to say what you need, and it’s okay to shore up your boundaries in whatever ways you can.
It's humorous to me that I didn't get my first pap smear til I was 26.  I was super scared and hated the uncomfortable feeling so I had been able to talk myself out of it till I got married.  I cannot count how many times a x-ray tech, OBGYN, RE, or nurse have gone up there now.  Like probably over 40 times.  He is right.  Once you start the road, you will not stop until you get pregnant.  It invades your sex life (months ago I blogged about sobbing during sex because of stress and fear of having to do IVF). 

5. Awkward. During one of the first visits where I was given the small cup and ceremoniously ushered into the small room, I actually ran into some people from my church afterwards. Of course they had their baby with them. I had a small cup that contained very personal contents with me. They asked, “What are you doing here?” I mean, what do you say?
It’s okay to laugh at yourself sometimes. And when someone catches you with your cup in your hand, that’s all you can do.
Seriously.  My poor husband.  He HATES those "donation rooms"  He can hear people outside.  The tecs rarely make eye contact with him.  He gets stressed.  It sucks.

6. Angry. Unfair is the password that gets you into the infertility club. Mary tells a story of a friend asking her if she was angry with God. “No!” she blurted. “I’m angry at pregnant women!” She knew this was irrational, but she also knew that it was good for her soul to be honest in safe places. You actually may be angry with God, and you may need to find some safe places to be honest about that.
It’s okay to express the darkness, even the stuff you’re terribly embarrassed about, because it’s good for your soul. But in the right places, with people who can handle it.
Oddly enough, I had a miscarriage with our first IVF and I wasn't mad.  I was really really sad.  I kept claiming the scripture in Isaiah that says "I won't cause suffering without something new being born."  The anger?  That set in after our FET.  So many prayers.  Perfect little embryos.  Just a cold shoulder from God.  I wasn't mad at Him exactly, just mad.  And pregnant women?  I hate can't be by them.  I don't really hate them, but it's the pregnant women that sting the most (not ones who have babies/children).  I don't know why.  It's ridiculous but it's true.  I have to hide every pregnant friend on facebook.  When I'm with pregnant friends I'm sure they feel like they are on egg shells and to be careful with "Holly."  This makes me sad/angry too. 


7. Stressed. Even though it seems like a stressed out couple is less likely to get pregnant, The American Society for Reproductive Medicine finds that there is no proof stress causes infertility. Besides, trying hard to “not be so stressed about it” never worked for us. It also didn’t help to “just stop trying.” Everybody has a friend who was infertile for 73 years, and the day they stopped trying, they got pregnant. That never happened with us.
It’s okay to be stressed. Don’t stress about your stress. Trying hard not to be stressed is silly.
Stress is the worst and it's so true when people say "don't stress, relax"  That STRESSED me out!  I mean, in the 2ww, how can you not be nervous/stressed?  You just spent you life savings, put your body through hell and back, and probably have a 50% chance you're pregnant.  That is stressful.  You know what else is stressful?  The wife doesn't ovulate unless she takes crazy amounts of femera (resulting in headaches and crazy hot flashes) and temps and takes OPKS every morning; she gets a rush of hope when she sees the positive smile face and wants to tell her husband.  But her husband has low testosterone, low sperm count, low libido.  He can see that "it is time" in her face and panics.  Then she panics.  Then, the window of opportunity leaves and the wife was on all that junk for nothing and the husband feels horrible and they both cry and wait for next month.  That is stress.


8. Despair. The cycle of hope and despair with infertility can take you out. I remember getting so excited when Mary was 2 days late, and just knowing that this time, it’s going to happen! Then, a few days or hours later, when she told me she got “it,” I would plunge into despair. The alternative is to temper your hope so that your despair doesn’t get so low. After about a hundred months of experiencing this cycle, we found that the best route is to keep hoping, and if it doesn’t happen, keep crying. It’s too hard to pretend that you’re not excited and that you’re not depressed. Be excited. Be depressed.
It’s okay to hope, and it’s okay to cry. Keep hoping and keep crying.
This one spoke to me the most.  I am so guilty of "tempering my hope." Because I don't want to fell the pain of failure again.  On our last FET I wouldn't allow myself to get excited that it would work; it didn't.  I was sad anyway.  I love the "Be excited, be depressed" advice.  Don't stop hoping is so so hard but probably so so healthy.

9. Loss. This was not how it was supposed to be. This was not what you dreamed it would be. And you don’t know how it will end.
It’s okay if you don’t know how to wrap your mind around your emotions. Be gentle with yourself for not totally having control of how you feel from moment to moment.
Miscarriage, failed IUIs, failed FETs.  My dreams are a loss.  I thought I'd have all my kids by age 30.  How will it end?

10. Ambivalence. Every time you have to go through another kind of treatment, you ask yourself: “Is it worth it? Do I really want it that bad?” And then in the very next breath, you are taken out by the sheer magnitude of how much you want a baby.
It’s okay to want and not want. That’s normal. 
During our 2nd IVF (the frozen embryo transfer) it was the first time in 2 years of ovulation meds and IVF meds that I said outloud "I don't know how much longer I can do this."  It impacts us financially and emotionally but PHYSICALLY too.  Breaking blood vessels with injections, feeling nasty, gaining weight, all for what?  A negative pregnancy test.  But then, in the next breath, I realize how bad I want that baby and how I will stop at nothing.