Thursday, April 25, 2013

WHY IS LIVING WITH INFERTILITY SO HARD?

I've been thinking about how my life and attitudes towards many things have changed over the past few years.  Struggling with infertility has forever changed me because it's hard....really really hard.  It's been more challenging than all my negative life experiences put together and then some.  But why?  What makes it so hard?  I hope I can give you a glimpse of why this disease has turned my world upside down.  Here's my top 20 reasons why infertility sucks.

1)  Loss of identity:  Most little girls grow up always wanting to someday be a mom.  I'm no different.  While I knew I didn't want kids in my 20's, I knew I wanted them and never doubted my life would be any different.  Each and every time I envisioned my future, it was ALWAYS with children.  I wanted to be known as a mom...maybe a working mom with a career, but still a mom.  I feel like my future identity has been stolen.  My whole life, I've NEVER imagined what I'd do if I didn't (or in our case couldn't) have children.  All I can think of lately is now what am I going to do with my life?  In my head, I didn't make any future plans without having children in mind.  I went to school for a good education, got a decent job, married the guy I wanted children with, bought a house big enough for a family and now I may never be able to have that.  How am I going to make my life fulfilling without kids? I've never thought of that before...until now I've never had to.  

2)  No one understands how I feel: I wanted to share bits and pieces from another blog I recently discovered: 
"Infertility affects 1 in 8 people.  Looking at my facebook friend list, that means that 45 of my nearest and dearest are fighting this fight.

It also means that 321 of my friends have NO idea what it feels like.  

321 of my friends might know someone suffering.  They might be genuine when they say they are sorry I am going through this. 

But those 321 do not wake up every day wishing to just get the chance to be a mom. Those 321 do not feel a little piece of their heart break every time a woman enters a room, pregnant belly protuding.  Those 321 do not have to worry about how they will choose to live a child free life, when that isn't the choice they want to make at all.  Those 321 do not have to try to put on a smiling face day in and day out, just because the world says we should be happy for those that can conceive on their own.  

Those 321 do not have to listen to their husband say how he doesn't even want to think about not ever getting to see his wife carry his child.   To never be able to look into the eyes of something that is a little bit you, a little bit him.  Those 321 friends, many of whom get to tuck their children in at night, have no idea how lonely it is going to sleep in house with an empty spare bedroom. 

321 people get to live blissfully unaware that they just have to have sex with their husband or wife and will surprisingly see two lines pop up on a pregnancy test two weeks later. 

Those 321 people can probably walk through Target on any given Saturday without needing to race through the aisles so the other customers don't see the tears streaming down their face.  They can buy tampons without it meaning that you've failed, yet again. 

Those 321 know how hard it is to be a good parent.  They know of sleep deprivation. They know of survival on the less than minimum hours required to be coherent.  They know about diaper blowouts, vomit and fevers.  They know screaming, inconsolable children.  They know bullies and friendship troubles.   Those 321 know the blessing they get to tuck in every night. They'll get to look into their child's eyes and know that their reproductive systems work right.

They will never know how hard it is NOT to be a parent.  Their dreams will likely come true, even if they aren't to that stage in their life yet. They will never have to stand in this land of "What if I never know the joy?" and they'll never have to have someone tell them to just relax and wait. It will happen when God, the baker and the candlestick maker want it to happen.  

They'll never have to worry about the strength of their marriage.  Whether we can live a life without a child.  Whether we can stand the storm that tears you apart in a way that they'll never know.  Whether one's lifelong dream can suddenly be pacified with a new dream?  A dream that we all know is just a cover for the desire to be a parent?

They'll never have to think about not getting to see the joy on their parents' faces when they finally deliver the news that they've been promoted to grand. They'll never have to hide from family functions because of the child centered focus of every holiday. 

Those 321 can not begin to imagine how'd they'd react.  They might tell you that they'd be able to be happy for friends and family who get pregnant.  They might tell you that they'd stand strong to their belief and faith in God.  But they don't know how it completely breaks you.


Those 321 do not have to spend thousands of dollars to have a medical procedure that would "fix" their disease. They have not shelled out thousands of dollars on that medical procedure only to be told they fell on the wrong side of the statistics.  They have not wiped out their savings accounts to be able to try just one more time.   They don't know how even saying "just one more time" creates an overwhelming amount of fear and anxiety in knowing the end of a dream is closer than you ever want it to be."

3)  I may need to say goodbye to the biggest dream of my life.  Imagine something or someone you've wanted with every ounce of your being....how would you feel if you couldn't have something you so desperately wished for?  It's definitely NOT a good feeling to have.  How do you say goodbye to your dreams and move on to be happy?  No matter what I'll do with my life....it's always just be second best.  

4)  I may look healthy from the outside but feel awful on the inside.  Infertility is a silent disease. You can't tell who has it.  Some days due to medications or procedures I may have had, I'm physically in pain but can't really show it.  Also, while I may appear to be happy, most likely I'm struggling with alot of emotions on the inside.  While I may blog about it, usually I don't bare my deepest thoughts in general conversation and when I do it's pretty watered down. No one wants to be around a "Debbie Downer" all the time.  

5)  Watching other people take for granted what they have.  This kills me.  Having a family is a precious thing....most do it without much effort.  It's hard to hear people complaining about their kids when it's something I may never know.  People just complain about silly and trivial things when it could be much worse.  People also take it for granted that their reproductive systems work.  99% of people I know got pregnant for free and I have to pay thousands of dollars for a small chance.  It also breaks my heart when I see moms who don't want their kids...the news stories of someone who just throws a baby away when I'd give my left arm for my own.  

6)  Other diseases get more attention.  I'm not trying to create a list of the top 10 horrible diseases to live with.  As a therapist I can appreciate there are alot out there that I'm glad I don't have.  It just seems like infertility is swept under the rug.  Not talked about, NOT recognized and definitely NOT given the same attention.  I said it before and I'll say it again, just because it's not life threatening doesn't mean it's not life changing.  There are plenty of diseases out there that have pretty negative consequences and  aren't life threatening but infertility is barely recognized.  Just because there are no outright physical signs doesn't mean it doesn't have it's horrors.  There's advocacy, education, fundraising, walks, etc for every disease under the sun....expect infertility.  Can you imagine people lining up for an infertility walk?  Most people are naive to what it is and how it affects someone.  

7)  Embarrassment.  Getting pregnant seem so simple.  People do it all the time on accident and I can't get pregnant with 32 months of trying and an entire medical team.  What's wrong with me that I can't?  It's embarrassing that our bodies can't do what they are designed for, yet everyone else's can.  Also, having your most private details of your marriage and body discussed with a group of strangers isn't exactly easy.  Neither is being half naked EVERYTIME you see your doctor (and that's alot).  I've had so many instruments up my body...not exactly easy, it's painful and embarrassing as hell.

8) Pain.  Medical procedures are invasive and painful.  Frequent blood work isn't exactly fun and not much can be said about sticking yourself several times a day with a hormone filled needle.  Dealing with medication side effects such as menopause symptoms aren't on my top 10 either.

9)  Loss of my future. I may never get to know what it's like to be pregnant, to feel what it's like to have life inside of you.  I may never get to take my kid to the park or push a stroller down the street.  I may never have the holidays I hoped for with a big family. I may never get to be a grandparent. I may be all alone when I'm old.  

10) Loss of control:  While I know that many people choose not to have children, I chose to have them.  Only it's not that easy.  I may have no choice but to live child-free.  Infertility not only controls your future but also your every day life.  I'm at the mercy of fitting in doctors appointments around my cycle and their schedule.  It doesn't matter if I have a big event coming up or will be out of town or if I have to work.   I have to schedule my injections around my body, not my work schedule.  I little say in what happens to my body....the medications and the doctors do.  

11)  Loss of lineage. The family tree stops at me.  I may never get to know how something that looks a little like me and a little like Chris looks like.  I may never get to see my husband in my child's face.  

12 ) I've lost who I am.  I'm not the happy go lucky person I used to be.  The stress of everything has a way of taking it's toll.  Due to stress and lack of money, we rarely do the things we love doing.  

13) Watching others have what you can't.  Plain and simple...this is hard.  I'm surrounded by people with families.  It's like putting a starving person in front of food and not letting them eat.  I feel so left out and....empty.  It's hard to watch others have what you so desire.  I get teary when I travel accidentally down the baby isle in the store. I can't attend baby shower because I can't control myself from crying....I get to watch someone else live my dream.  

14) Constant reminders:  EVERYWHERE I go there's babies and families.  Facebook, television, conversations at work....  Comments are innocent but so painful to hear.  

15)  It's expensive: I work hard for my money and I've drained my entire life savings for one chance and ended up with nothing. Do you have any idea how bad that feels? 

16) Strain on relationships.  Chris and I have been tested.  Most people get married with the intent and expectation to have children.  It's strained our marriage but we are surviving.  In some ways it makes us closer.  It also strains relationships with family and friends.  Many can't understand where we're coming from and why it's so hard for us.  Sometimes we choose to isolate ourselves because it's too painful.  Others make that choice for us and distance themselves.   Many don't know how to support us and are afraid to ask.  Some think we are selfish.  If the table were turned, I'm sure they'd understand and things would be different.  I find it hard to imagine that those with children could imagine their life being any other way.  

17) Hearing bad advice.  This is just a given.  From day 1, I've heard it all.  Eat this, eat that, do this during sex, "just relax",  "It'll happen when God's ready", "pray", "I heard about a couple who adopted and then got pregnant"...the list is a mile long.  Plain and simple....these comments hurt.  It's a medical condition and many forget about that.  NO ONE should tell me HOW TO FEEL or give me advice just to say something or to make themselves feel better.  No one talks about the great stories of the couple who did everything and STILL ended up with no baby, yet I hear EVERY story under the sun about those who did.  What if that isn't me? 

18)  Losing time.  I'm getting older each day and my chances are lessening with each passing cycle. My 35th birthday is soon approaching, the age when infertility really drops. I've lost a few years of my life already dealing with this...years I can't take back.  I'm losing out on the fun in life

19) Failure after failure.  Every month, without fail I am reminded that I didn't get pregnant.  As soon as I've gotten over it, I'm reminded again 28 days later.  We put so much effort most months and have nothing in return.  

20)  Personality changes.  While infertility has changed who I am in some good ways, it's also made me more cynical. My patience is often thin and I'm often angry that life isn't fair in a big way.  If I'm not angry then I'm sad about losing out on what I want so bad in life.


In short, my patience is thin, my money is tight, my body has been through hell, my relationships are strained and my hopes and dreams have been broken.  


 




6 comments:

  1. Hi Rachel,

    A friend recommended this blog to me and I'm so glad she did. You are not alone. My husband and I are also 1 of the 8. My best friend from college is 1 of the 8, and her best friend from HS is 1 of the 8. I know of others too. For me, I personally found that sharing my story, being completely open about it helped me heal. My BFF is very private about it, but because of me sharing it with her, I could help her with the process and she in turn helped her BF from HS. I found chatting on a message board also helped. But, I just wanted you to know that you are definitely not alone. I could offer you advice, tell you what worked for me, but I know that is not what you want to hear. I will tell you this, whether you have a biological child of your own or not, the scars of infertility will always remain with you, so try to embrace them and how they have made you the strong, resilent woman you are. Focus on how if your marriage can survive this, it can survive anything. Even after having gone through my first IVF cycle 9 years ago, (and it failing miserably, I might add), reading your blog today brought me to tears. How, I have friends that have exactly what I have, but haven't spent the 100K to have it. How our house is smaller than we would like, my husband works longer than either of us would prefer, all because we are now playing catchup.

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  2. What I I ally wanted to say is that stay positive, it helps. I now have 4 sweet kids all conceived thru IVF. The best that money can buy. I'm lucky, and I hope you are too. You will love your child in a way others will never understand, and that's a gift. Your bond will be stronger, your love greater. The journey might be difficult, but I truly can't wait until I tell my kids how badly I wanted hem and what I was willing to do to have them. I'll be thinking and praying for you and your husband. And I'm going to look into organizing a walk.

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  3. I found your post when I was frustrated with some of my friends who have become mad at me for not reacting in the way I should to their good news. So, your blog came up when I was googling advice for how not to tell them how their indifference and egocentrism is personally devastating to me. You summed up a lot of things that I feel. it was comforting. I will let you know that we have been through six failed treatments after 1 successful IVF treatment. Keep trying, you could get lucky and I will send you all the positive thoughts I can muster. Good luck, and I will continue to think of you and your family

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  4. Thank you for this. My husband and I agreed that this IVF cycle was our last attempt after 10 years of struggles. It didn't work and now we are out of options and money. While I cried reading your post, it helps to know other people are in the same position we are and they understand. I wish you can find happiness in whatever the future holds for you and your husband.

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  5. I am just reading your blog today after trying not to go into my dark place of yet another failed month. My infertility journey started much early than most (at 25) and came with no warning signs. Being in good health, the right age with no medical history did nothing to keep this from keeping this torture away from me and my husband. we have been trying for over two years and continue to watch as close friends and relatives have one, two or their third healthy baby (ies). I try not to cry and I try to put on the good face, but inside I'm exhausted. I constantly think if one more person tells me "oh you're still young", "what's the rush", or the best "have you considered option?" I will punch them in the nose. But I keep moving on...somehow. Thank you for having the courage to write a blog about this when I can hardly voice my sorrows to anyone - as no one really gets it except those going through it.

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  6. Hi, ive been infertile for years now, this bought tears to my eyes just like everyday. I dont even have words anymore to say how I feel...life really has no meaning without a child. How unfotunate am I.

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