Saturday, April 25, 2015

My thoughts on supporting those with Infertility

Where to start.  I've been wanting to write this post for over a year.  It probably contributed to why I stopped writing so much.  I kept thinking it would be my next post but it is not a simple one to write and easily became the procrastination trigger to not writing.  It is a subject that impacts my entire life.  Well, our life... Xan and mine.  A subject that many avoid.  A subject that often when I bring up with others, hesitance, resistance, and a quick change of subject on their part is quick to come... mostly out of their own fear, feelings of inadequacy on how to handle the subject, and/or in my opinion, a misguided notion to not talk about it that surrounds the topic:


It is a subject that is so personal and intimate for those who experience it.  Emotions are unique, personal, and vary from one extreme to the other.  Some women talk about it with complete openness to the whole world.  Other women find it so extremely personal that they flinch at the mere suggestion that babies and pregnancy exist.  How does one find the balance?  Hundreds of blogs and how to sites describe "how to support your friends with infertility."  I've scoured the internet in hopes of finding one that fits my needs because that would be easiest.  How simple would it be to simply attach a link that says, "Hey!  Check this out.  This is how to support me and my husband through this tough time."

What have I found?  It doesn't exist for me.  Many tidbits of advice contradict each other from one site to another.  Most, I strongly disagree with for my needs.

Therefore, I have concluded that the best advice that one can give to another for how to support someone through infertility is simply to ask them.

"How can I help?  What do you need?"  

I do not wish to share the intimate details of our specific trouble/diagnosis with infertility over the internet.  But, I don't mind people knowing that it exists.  I've always been of the opinion that people cannot help me if they don't know a problem exists.  I have been open from day one about my learning disability.  I proudly admit to being ADHD and Dyslexic when it causes me to blunder, use the wrong word (appendum instead of addendum being the most recent), or use expressive hand gestures in place of words in the middle of a presentation at work to end a sentence.... not realizing that the image of what I was trying to say did not come out in words... leaving blank stares as I keep going until a brave soul says, "Ummm... Ashley?  What does *mimics my hand gesture* mean?"  It makes it easier to laugh it off sincerely, share a laugh with everyone else as they realize what happened, and move on to the next point without feeling like I'm stupid.  Those who know me well learn I actually appreciate it pointed out and corrected. 

I digress.  Back to the main focus of the post. How can I support those going through infertility?  My answer?  Ask them.  Everyone will have different needs, be at different stages, and require different approaches.

For me?  There are 10 things I'd like to share:

1.  Don't assume that our lack of children means we A) don't like kids  B) don't want kids or C) don't care that every month my body tells us that we are not going to have kids this time around... try again.

Modeling the baby carrier Crystal helped me make.
Xan and I first talked about having kids early on in dating.  We both approached dating as, "Yes, I am looking for a marriage partner.  Let's get the big things out of the way to make sure we stand a chance before tackling the minor issues."  At the time, I had been diagnosed with probable Endometriosis by two different doctors.  I felt it was important to explain that if we got married, I might not be able to carry a child full term, if at all before things got serious between us.  We both had always considered adoption as a possibility prior to dating so it was sort of a non-issue.  Would it be hard if we couldn't have our own kids?  YES!  But, we had plan B in place that we planned to do regardless of having our own children or not so we knew we would be okay.  Blessedly, I had a Priesthood blessing the night before the diagnostic laproscopy for the Endometriosis by Xan and my father and was told I was healed.  The next day, nothing was found and I have never experienced that INTENSE agony of symptoms again.  So no, that is not our current problem... but I consider that experience a HUGE blessing in our lives as it prepared us for our current predicament: Infertility for other reasons.

2.  We may not have our own children, but we know a thing or two about caring for children.  

These three monkeys ADORE Xan!
Experts?  Of course not.  But far from ignorant.  We have 23 nieces and nephews with another on the way.  We both babysat A LOT prior to getting married.  I was Primary President for a couple of years over the nursery and occasionally had a Sunbeam or two in our small, student branch (church congregation).  I frequently was left alone with 4-6 toddlers, many crying after their parents dropped them off, until the rest of the nursery staff finished socializing after sacrament and came to help.  ;)   I never minded and enjoyed the challenge.  I have worked with adults with developmental disabilities for 4 years so far.  Through this job, I have survived extreme meltdowns in public, doing the potty dance because I couldn't leave an individual alone long enough to use the bathroom, tucked them in at night with a lullaby or story, sat next to them in the hospital after an extreme illness
Seriously, all of my sisters' and brother's kids LOVE Uncle Xan.
and cried because we weren't sure if they would make it, and more.  Until I recently switched to behavioral supports, my job was to care for them in their home.  The tasks were very similar to what a mom does besides the maintaining a professional relationship thing (on the outside, yes... but internally... they wrap themselves around your heart!).  I have a MA in Applied Behavior Analysis which means I am qualified to write and implement behavior modification plans.  I deal with head banging, self-injurious behaviors, trouble transitioning from one task to another, physical aggression, emotional distress, excessive spitting, eloping, running from supervision, teaching communication skills through pictures, signs, gestures, iPad, etc, just to name a few.

 Xan and I don't know what it is like to have the stress and strain of a child impacting our personal life at home. It's true. We DO enjoy our freedom, our sleep, and I certainly enjoy leisurely shopping, but we look forward to the day that we will lament their loss that is parenthood.

3.  Whether or not I am currently doing treatments does not exempt me from feeling each unsuccessful cycle as a punch to the gut.

Enjoying Grandma's house (my mom... their grandma).
Mother Nature has a way of making herself known at very inconvenient times.  This last Valentine's Day, it showed up in the middle of our Valentine's dinner date.  We were with friends and I had to plaster the fake smile on my face for the rest of the evening.  (Treating the Elder missionaries out for dinner with friends is not the time to bring it up...)  Even when there is no chance of pregnancy, each cycle represents a child that will never be.  I cry.  I take deep breaths.  Sometimes, it spirals into a full depressive cycle that can take months to recover.  Xan and I mourn.  Our own pain causing the other sympathy pain to add to our own pain.  Seeing your spouse hurt for something you desperately want yourself is rough.  

Xan and I have been lucky.  We have not been angry at each other nor played the blame game.  I think it is because we had already discussed this possibility long ago when we were first dating that we have been able to remember we already had plan B.  Unfortunately, living in limbo and not knowing when/if/where we will be in a year, 6 months, even one month, makes it pretty much impossible to start the foster/adoption process.  So, plan B will have to wait... 

I crocheted this little guy's blanket.  :)

4.  Do not compare one person's infertility struggle and journey with another.  Infertility is infertility whether it is primary infertility, secondary infertility, repeated miscarriages, choosing to start fertility treatments, deciding not to do infertility treatments, choosing to adopt, not choosing to adopt... etc.

I am against all forms of, "my life is worse than your life."  I cringe whenever I hear, "She doesn't know heartache... I'll show you heartache."  These statements are rarely said to me directly about me but I hear them in conversations when people talk about others.  STOP DOING IT!!!  No one can compare grief, sorrow, trials, longing, pain, etc.  They are subjective and everyone has different responses to different things.  Everyone's path is going to be different.

I recently read an a quote from a book called Gender and the Social Construction of Illness by Judith Lorber that I thought was extremely fitting:

"Doing IVF is often an obligatory rite of passage not only to try to have a child but also to try to reach a secondary objective as a necessary substitute, that is, protection against social stigmatization and a means to obtain social recognition as an involuntary childless woman" (Koch 1990: 240-241).  Involuntary infertility is a form of sick role because the individual is not held responsible for her or his condition; to refuse treatment implies that the condition is voluntary and therefore not a true, "illness," deserving sympathy and emotional support.
One should not be required to undergo IVF simply for that secondary objective of obtaining sympathy and emotional support.  Decisions of what treatment/path/route to take are personal and often led by inspiration.  To deny someone sympathy and emotional support simply because they do not feel that IVF, other forms of treatment, or adoption is for them, is not mourning with those who mourn and comforting those who stand in need of comfort.

5.  Please forgive my Bipolar-like behavior around pregnant women, babies, and baby-related conversations/events.

Being an Aunt is awesome.
It's not you.  It's me.  Really!  I consider myself lucky again.  So far, I have not felt bitter or angry towards those who pop out children just from their clothes being washed together.  I am sincerely happy for those who are able to get pregnant, have children, and/or successfully adopt.  But that does not mean that these things don't remind me of what I do not have.  Some days, I scroll through Facebook and cheerfully smile at ultra sounds, gasp in excitement when a dear friend shares their wonderful news, or laugh at the destructible messes someone's toddler made.  Other days, I quickly scroll past them and ignore they exist because I just can't handle the grief.  Some days I enjoy talking with Mothers about their babies, the developmental achievements, sympathizing with how hard it is to be a mom.  Other days, I'm going to walk away feeling empty and seek solace with ANYONE who can go longer than five minutes without talking about their children.  Sometimes I'll attend a baby shower.  Other times, absolutely not; you don't want me there if I don't feel I can behave!  

Again... it's not you.  It's me.  

6.  Don't ignore the fact that we are infertile.

We love sharing our interests!
Since Xan does not want to talk about it with anyone but me and will only talk to doctors due to logical necessity, this advice applies solely to me.  He's always been a much more private person than me and he considers this a matter between him and I.  Sometimes, I need to talk about it with more than just his perspective.  I need to feel that it is okay to say, "Yeah, this month was rough when we found out I wasn't pregnant," without the fear of that awkward silence and the quick change of subject because the subject is taboo.  I promise I will continue to strive to not bring it up in the middle of baby showers, crowds of people, and simply inappropriate times.  But, in small groups of women where we are getting to know each other... shouldn't that be a safe place?  

7.  Show me you care.  But only if you do.  ;)  
Check up on me.  Stay away from questions about specifics unless I bring them up.  But, ask the general ones that are ALWAYS safe with me: 
  • How are you doing really?  I know this is tough.
  • Do you need anything?  Do you need to talk?
  • Do you need a distraction? 
Let me feel helpful.  That is a HUGE one.  For my emotional protection, I apparently have developed a little bit of an apathy towards babies in general.  I no longer find opportunities to hold babies just to hold a baby.  But letting me hold your baby to help you out?  Best therapy ever!!!  Hand that squirmy bundle over and go dish up a plate of food and eat it in peace at the next pot luck.  Need a nap, a shower, or want to go shop leisurely?  I will come over for a couple of hours and gladly give you a break.  

8.  Do not hand me a child going through separation anxiety in public or take offense if I ignore your child who is showing clear signs they want nothing to do with me.  

TV time with Uncle Xan.  ;)
Obviously, it will sometimes happen since babies can be unpredictable.  But, if you KNOW your child is going through that phase, find someone who knows the child better and let me avoid the sting and blow of rejection. If I am babysitting, I'm fine.  The child and I have time to get to know one another once you are out of sight.  But in public events where they can still see you?  Not good for me. Children eventually grow out of it and when they are ready to play with me, I'll be ready to play with them.

9.  Please... Pretty please with a cherry on top!... do not say the following:

  • Oh, it will happen when it is right.
  • You know what will happen after you adopt, right?  You'll get pregnant right away!
  • Just relax!  
  • You may not want to do [xxxx] treatment now, but give it time.  You'll get there.
  • But, kids from foster care are broken!  [Insert horror story here.]
  • And, anything that implies only brand new babies are worth adopting...

Trust us.  We have hashed out all possible avenues.  We have had discussions with doctors who are aware of our medical conditions.  We have done the research.  We have prayed and we have been given guidance.  The choices we make are choices we feel are right for us.  Future decisions are pending due to our limbo status and not knowing what options will even be available for us.

10.  Don't be afraid to tell me you are pregnant.

Seriously.  I'm not going to hate you.  I will be happy for you!  If you caught me on an off day, I will simply get back to you when I'm ready to fully rejoice with you.

***This is a list specific to our situation and my needs.  It is by no means a list that applies to everyone.