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Five Hundred Twenty Five Thousand Six Hundred Minutes – How do you measure your life in infertility treatment?

March 26, 2015 | By:

 

Five Hundred Twenty Five Thousand Six Hundred Minutes

How do you measure your life in infertility treatment?

How do you measure a day, or a year?

 

Five hundred twenty five thousand six hundred tests
Five hundred twenty five thousand moments, oh dear
Five hundred twenty five thousand six hundred dollars
How do you measure, measure an IVF year?

In daylights, in sunsets
In phone calls, in cups of coffee
In inches, in pounds, in needles, in surgery
In five hundred twenty five thousand six hundred minutes
How do you measure, a year of infertility?

How about love for the baby you’re creating?
How about love for the people helping you conceive?
How about love for your partner or a friend?
Measure in love

Cycles of love
Cycles of love

Five hundred twenty five thousand six hundred blood draws
Five hundred twenty five thousand follicles to count
Five hundred twenty five thousand six hundred heartbeats
How do you measure the life of an infertile woman or a man?

In diagnoses that she learned
Or in times that he cried
In money they lost or the day the baby died?

It’s time now, to sing out
Though the story never ends
Let’s celebrate
Remember a year in the life of our infertile friends

Remember to love
Oh, you got to, you got to remember to love
Remember to love
You know that love is a gift from up above
Remember to love
Share love, give love, spread love
Measure in love
Measure, measure your infertility in love

Cycles of love
Cycles of love
Measure your infertility, measure your life in love

Inspired By Rent — Seasons Of Love, Lyrics

 

 

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The Risk of Choosing The Mindset of Infertility

October 24, 2014 | By:

I’m back (after a blogging break) and I’m mad.  Very mad.  I am mad at doctors, mad at the media, mad at the reproductive community, mad, mad, mad!  Why am I mad you ask?

Good Question.

It took me awhile to figure it out, which makes me even . . . madder!  Okay I know that’s not a real word but you get my point . . . I think it’s been building up inside me for . . . oh about 15 years.  Because 15 years ago (give or take a few years) I was officially LABELLED as INFERTILE.  It is not a nice label.  It is not a label anyone ever wants.  And yet there it is.  A LABEL in my medical chart.

It’s like having a huge tattoo on my forehead that screams to doctors and the world:

INFERTILE:  WILL NEED HIGH-TECH EXPENSIVE MEDICAL TREATMENT TO EVER HAVE A CHANCE TO CONCEIVE AND CARRY A CHILD.

This is a label which makes your doctor look at you differently.  A label which makes YOU look at YOU differently. A label which makes you look at your partner differently, and makes your partner look at you differently.

The LABEL stuck with me for over 15 years.  And indeed, after years of IVF those labels became so convincing to everyone, and I mean everyone, that no one believed there was any hope for me.  It was like getting put into a closed box which doctors didn’t even want to try to open.

I listened to doctors, and nurses, and even friends, as they recounted the statistical UNlikelihood that I would conceive and carry a baby, as the statistics of the likelihood of what I wanted more than anything, became smaller and smaller, and smaller.  I let them convince me it was impossible.

The list of reasons they gave me was huge.  Insurmountably huge. And so I believed them when they told me I wouldn’t conceive.  I believed them when they gave me diagnosis after diagnosis.  I didn’t question their opinions or their conclusions.  I didn’t challenge my own belief in the power of my mind, the power of my body, the power of ME!

I BOUGHT IT ALL HOOK LINE AND SINKER!

And that’s why I am mad.

I let them compartmentalize me.

I let them put me in a box with a label and give up on me.

I let ME give up on ME.

Today there are countless ways to build a family.  IUI, IVF, IVF with donor egg, IVF with donor sperm, IVF with egg and sperm donor, embryo donation, gestational surrogacy (with any of the aforementioned IVF combinations), traditional surrogacy, domestic newborn adoption, foster-care adoption, international adoption; and there are more options than what I have mentioned.  It is a colorful and beautiful world filled with reproductive and family building options.  I live and breathe it every day as I help others move toward their dream of building a family.  But I couldn’t see any of it for myself.  All I could see was that tattoo staring back at me in my bathroom mirror every morning.

INFERTILE  

I read when magazines and newspapers attributed the label to countless celebrities, the media’s whispered words of shame and failure . . . [insert celebrity name here] can’t get pregnant] . . . she’s INFERTILE.  But I didn’t believe it for them.  I believed they would (or will) prove the label was wrong.  Prove the media was wrong.  I believed that others could defy that label which defined me.

INFERTILE 

God I hate that word.  I hate the feelings it brings out in me.  Feelings of failure, sadness, desperation, and now anger.  But I am not angry that I am infertile.  I am angry that I gave up on myself.  But then something happened.  Something that wasn’t supposed to happen . . . not to me, not to someone with all those LABELS.  Something extraordinary happened that caused me to challenge my doctors’ assumptions, that caused me to look at the LABEL tattooed on my forehead and ask:

IS IT REALLY TRUE?

AM I REALLY INFERTILE?

And then I realized it isn’t impossible.  Nothing is impossible.  In fact everything is POSSIBLE.  And with that realization my entire world changed.  My longheld beliefs about myself and my infertility CHANGED.  Everything I feel and believe about what I have lived through for well over 15 years, what I tell my clients, how I look at the community and industry in which I work, has shifted.  I suffered for over 15 years for no reason.  There was always hope.  I just wouldn’t let myself see it.  But I see it now.  I see HOPE everywhere, for everyone, even for ME.  No one really knows who is infertile.  Not even your doctor.  Nothing anyone tells you has to be true.  Not unless you believe it’s true.

My point is this:

Do NOT let your doctor get you down.

Do NOT let your doctor dismiss you.

Do NOT buy into the label(s).

Do NOT believe statistics.

PLEASE DO NOT BELIEVE STATISTICS.

I have finally realized that everything and anything is possible.  Because it is.

ANYTHING AND EVERYTHING IS POSSIBLE!

It will happen to you in the perfect time, and in the perfect way.  But you do not have to suffer while you wait. Do not do what I did.  Do not buy into the labels.  Do not give up or give in.

Instead of choosing the mindset of infertility, choose the mindset of belief.  Choose the mindset of knowing that your time will come.  Accept, believe, and KNOW that everything and anything . . . and I mean ANYTHING . . . is POSSIBLE.

Because it IS.

And I know this because after 15 years of living with the label, and living with the tattoo on my forehead, something happened which proved everyone wrong about everything.  I now know that

I AM NOT INFERTILE

I am

POWERFUL

My body is 

POWERFUL

and so is

YOURS!

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Post Traumatic Infertility Stress Disorder and National Infertility Awareness Week

April 2, 2013 | By:

We are rapidly approaching National Infertility Awareness Week (April 21-27); a week that is devoted to raising awareness of infertility and its impact on our lives.  This is an important week, not just because we are discussing infertility on a national level, but because many of us may are faced with thoughts and memories that have long since been buried.  Or have they?  Many an infertile woman will understand very clearly what I mean when I refer to that which I call Post Traumatic Infertility Stress Disorder (PTIFSD). This is the part of our lives where we are periodically haunted by our infertility (IF) treatment, sometimes years after it has ended.  Regardless of the outcome of our treatment, PTIFSD is signaled by a random flashback to one of any number of emotionally devastating moments during infertility treatment, a flashback that comes out of nowhere and is so vivid and acute that it catches our breath and momentarily disables us.

The first time I encountered PTIFSD was about two years after I had stopped IF treatment.  One day I was holding my baby while on line in Starbucks and a woman came in bursting with news for the friends who were waiting for her: she was finally pregnant with twins and her beta was high!  Upon overhearing this news (along with everyone else in Starbucks, most of whom probably had no clue what a beta is or why it was relevant) I had an immediate flashback to a time I too had learned I was pregnant, had a high beta and was probably carrying twins.  My flashback delved further, rapidly scrolling through memories of the messages on my answering machine, including those from three nurses at my clinic to congratulate me and share their excitement about my pregnancy.  Two of them gave me information that initially had not been shared with me, information which confirmed that I “must be” carrying twins, although that would later be confirmed by ultrasound.  My brain spun with these memories and I became disoriented.  It was only when the child in my arms, my child, grabbed my hair to get my attention that I snapped out of my seemingly trance-like state.  I forgot where I was in time.  I forgot I had a child.  All I could remember were those happy moments of learning that I finally had a healthy pregnancy under way and the devastation that followed approximately 9 weeks later when I learned that I had to undergo yet another D&C and that my dreams were once again, dead.

While some of us do emerge emotionally unscathed from infertility treatment, many of us carry battle scars that last a lifetime.  There is a cruel side of infertility treatment that people don’t often talk about and it involves the emotional scars we are left with, sometimes years after our treatment has ended and we are supposed to have “made peace” with our family building.  Not many people will acknowledge that they still have bad days, get jealous or angry (sometimes very angry) over something small and seemingly benign but nevertheless powerful enough to cause a shock wave of traumatic and painful memories from our days undergoing infertility treatment to overtake us and send us into a tailspin, the likes of which we haven’t felt since. . . well since our days of infertility treatment.  It has been a long time since I had a PTIFSD encounter but sadly, I had one recently and it was no easier to tolerate than was the Starbucks encounter I described above.  And what struck me most was that while I understood that my infertility might still be fresh in my mind less than two years after my husband and I walked away from our IVF Clinic, I didn’t expect those same memories to carry with them the same ferocity so many years later.  I mean, it has been over ten (10) years since I underwent an IVF cycle.  Certainly time must have tempered my feelings, yes?

Apparently the answer was a resounding “no”.  I was checking my email one morning when I received a surprise baby-on-the-way announcement from one of my childhood friends.  She and I not only went to kindergarten together but we went through infertility treatment together.  Despite having similar diagnoses, she went on to achieving several successful pregnancies via egg donation.  I was so happy for her that I knitted a little sweater for her first born.  What I experienced upon opening her email a few weeks ago, however, was hideously painful and I was left depressed, lethargic, moody and frightened.  My friend had gotten pregnant by accident, in other words, without medical assistance.  Indeed, much to everyone’s stupefaction, despite her age and many infertility diagnoses, she is experiencing a very healthy twin pregnancy.  As I sat there reading her email I was happy for her, but at the same time I was overcome by memories of us holding hands while waiting to have our blood drawn in the morning, and the time she called in tears because she finally had to face the fact that she needed to use donor egg if she wanted to achieve a pregnancy (or so everyone thought at the time).  And as I relived those memories (emphasis on the word relive) and read her email again I suddenly was overcome by anger and jealousy that I was not the one sending out the email.  Out of nowhere I was overcome with a jealous rage that bordered on hate. Hatred for someone I have loved since I was so small a person?  Yes, if I am truly honest I have to admit that I felt inklings of hatred for her.  For the next day or so I had mood swings and bit people’s heads-off for no reason.  It was only when I finally told my husband what I had received in that email that the feelings became less intense.  Somehow by acknowledging my feelings I was finally able to begin to move away from this non-stop video memory spinning inside my head.  Somehow this email had me caught in a perpetual mental loop of painful and devastating memories from my IF.  As the memories subsided, I remembered a conversation with a therapist I had seen during and after my IVF days.  During one of my sessions, she commented that what I was experiencing seemed a lot like post traumatic stress disorder; and so she and I created a new diagnosis, Post Traumatic Infertility Stress Disorder or PTIFSD.

I now have learned how to recognize and embrace the PTIFSD memories and use them to remind me of the joy that surrounds me.  I hope my PTIFSD is now truly at rest in my past.  But it’s okay if it is not.  Because I know where these feelings come from, and that they will go away.  These feelings do not control me, nor does my infertility continue to define me, instead it is the genesis of my growth as a human being, a woman, and a mother.

I recently had dinner with an infertility doctor.  He asked me why I wrote The Infertility Survival Handbook and whether it had been cathartic.  I told him why I wrote it – to let other women know they were not alone – but I also acknowledged that writing it wasn’t the least bit cathartic.  My healing process is one that continues.  Perhaps writing The Infertility Survival Handbook was my way of starting the healing process but I would be lying if I said I was finished with it.

The Infertility Survival Handbook was released during National Infertility Awareness Week (NIAW) in 2004.  Today as we approach NIAW, I am thinking of all of the women (and men) who are currently struggling to have a baby.  Now on its’ ninth (yes 9th!! Woot! Woot!) printing and as I contemplate writing an updated version, I think of all those women who have read my book and have emailed me, messaged me on facebook, or even called me (on a private number at home at 6am); women, who like me, struggle with the emotions that linger even after they have become mothers.  PTIFSD is not yet in any diagnostic manuals, but I wish it were.  I had two wonderful therapists who helped validate the emotions I was experiencing both during my treatment and well after it ended; therapists who believe in PTIFSD and its power.  Not everyone has people in their lives like my therapist who invented PTIFSD, or someone that understands and “gets it”.  And it is for those women I write this blog.

 

No you are not alone.  Being unable to conceive a child when you so desperately want one, is painful.  You are entitled to express that pain.  You should not be shushed or told to “just relax” so you can get pregnant.  And yes, that pain can stay in your heart and mind and hide there waiting to jump out and catch you off guard.  That too is normal and you are entitled to express that pain as well.  You should not be shushed or told “it’s over now just forget about it”.

 

You are not crazy.  Infertility is a part of your life regardless of the ultimate outcome.  It is an experience that shapes you and has the power to disfigure you – to change who you are – if you let it.  If you think you might have “Post Traumatic Infertility Stress Disorder”, talk to someone.  Get those feelings out.  Give your feelings a name.  Sometimes just by having a name, a reason, or a diagnosis gives you closure and helps you move past the feelings and you experience a sense of relief that allows you to let go.  I may not be like my childhood/IF buddy who is on the verge of delivering twins.  But I also am no longer be at the mercy of my memories.  By being reminded that my reactions and feelings when confronted with things that trigger painful memories has a name, PTIFSD, I have been able to regain my balance.  Or perhaps it is simply the understanding that, like anyone who goes through a very traumatic experience, I am bound to (at some point) relive that trauma, which has enabled me to begin to heal on a new, even deeper level.

 

Infertility awareness requires not only an understanding and recognition of the disease itself but of what that disease can do to us.  So if all the media coverage regarding infertility in the coming days (of which I hope there is a lot), finds you feeling a little more blue (or red) than normal, a little bit more withdrawn or melancholy, remind yourself that this media coverage is triggering some old buried memories, just as that woman in Starbucks and my friend’s email caused me to become momentarily blinded by sadness, grief, and anger.  It is okay that our infertility causes some of us to experience things and feel emotions long after we thought they were over.  That can be a part of infertility too, PTIFSD; and it too deserves some recognition during NIAW.

The point of NIAW is to help us recognize that we should not suffer in silence, that we should band together and make people aware that infertility is a disease.  What I wanted to share with you, and make people aware of is not just the medical diagnoses, but the sometimes unbearable emotional pain we feel.  We also should not be forced to suffer the emotional pain in silence.

 

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