Understanding the Grief of Infertility

Chances are, you know someone who is struggling with infertility. More than seven million people in the United States experience infertility.  This figure represents 12% of women of childbearing age, and one in eight couples. Yet, as a society, we are extremely uninformed about how to provide emotional support for our loved ones during this painful time.  

Perhaps attempting to explain the pain that an infertile couple experiences can help others to understand what their infertile friends and family members are going through.  Understanding the pain of others can foster empathy, and true empathy can create the environment necessary to sincerely support other people.  Therefore, let us try to explain the pain of infertility to others so that they might be better equipped to support us through our grief.

As the RESOLVE website explains, "infertility is, indeed, a very painful struggle. The pain is similar to the grief over losing a loved one, but it is unique because it is a recurring grief.  When a loved one dies, he isn't coming back. There is no hope that he will come back from the dead. You must work through the stages of grief, accept that you will never see this person again, and move on with your life.

The grief of infertility is not so cut and dry.  Infertile people grieve the loss of the baby that they may never know. They grieve the loss of that baby who would have had mommy's nose and daddy's eyes. But, each month, there is the hope that maybe that baby will be conceived after all. No matter how hard they try to prepare themselves for bad news, they still hope that this month will be different. Then, the bad news comes again, and the grief washes over the infertile couple anew. This process happens month after month, year after year. It is like having a deep cut that keeps getting opened right when it starts to heal."

I found an older blog post on WorldofWinks.wordpress.com where the author took information a friend had sent her about grief, and she adapted it to be perfectly applicable to infertility.  I think it might help my friends and family to understand how I feel and what they can do to help me when I am struggling or having a bad day... and maybe it will help them not to say the wrong thing when I'm happy & having a good day too :)

Things I Wish I Could Tell People About Grieving Infertility or Just Grieving

1. I wish you would not be afraid to speak to me about what is going on in my life, and to ask what you can do to help.
2. If I cry or get emotional when we talk about them, I wish you knew that it isn’t because you have hurt me. The fact that I have suffered has caused my tears. You have allowed me to cry, and I thank you. Crying and emotional outbursts are healing.
3. I wish you wouldn’t pretend that nothing is happening to me, because it is a large part of my life. I need my friends and family by my side.
4. I will have emotional highs and lows, ups and downs. I wish you wouldn’t think that if I have a good day, my grief is over, or that if I have a bad day, I need psychiatric counseling.
5. Grieving and what I’m going through is not contagious, so I wish you wouldn’t shy away from me.
6. I wish you knew that all of the “crazy” grief reactions I am having are in fact very normal. Depression, anger, frustration, hopelessness, and questioning of values and beliefs are to be expected during and following what is happening to me.
7. I wish you wouldn’t expect my grief to be over if and when I appear to be smiling or happy.
8. I wish you would understand the physical reactions to grief. I may gain weight or lose weight…sleep all the time or not at all…want to surround myself with business or be all alone, all of which may be related to my grief.
9. A birthday, anniversaries of big days, holidays, and the day I found out, are all terrible times for me. I wish you could tell me that you are thinking about me, and if I get quite withdrawn, just know I am doing my best to cope. Please don’t try to coerce me into being cheerful or tell me that it will be better soon.
10. It is normal and good that most of us re-examine our faith, values, and beliefs throughout this journey. We will question things we have been taught all our lives, and hopefully come to some new understandings to include those with God. I wish you would let me tangle with my religion, opinions, and beliefs without making me feel guilty.
11. I wish you would not offer me drinks or drugs to ease the pain. These are just temporary crutches. The only way I can get through this grief is to experience it, and sometimes immerse myself in it. I have to hurt before I can heal.
12. I wish you understood that grief and difficult situations change people. I am not the same person I was before I experienced it nor will I ever be that person again. If you keep waiting for me to “get back to my old self,” you will be frustrated. I am a new creature with new thoughts, dreams, aspirations, values, and beliefs. Please try and get to know the “new me”…maybe you will still like me.

Khloe Kardashian is Pissing Me Off

Khloe Kardashian and Lamar Odom married in 2009. Since that time the couple has been trying to conceive, and haven't been successful.  According to Perez Hilton on May 7, 2013, Khloe had an interview with Redbook magazine where she discussed her infertility issues. She claimed she wants everyone to know the "truth." Many applaud her for coming out and discussing her pregnancy issue, but I, along with many others, question whether she’s telling herself "the truth."

In the article Khloe discusses hormone treatments that she has undergone to try to get pregnant. “It’s more about my hormones being off.  I was taking hormone shots to stabilize them, and you have to take those shots consistently and they have to be done by a doctor—you can do them yourself, but I couldn’t.  And then after your cycle, you have to go to the doctor for ultrasounds and more testing. And if I’m in Miami and miss a treatment, I have to start all over again. It’s a commitment and I don’t mind doing it, but the timing was just off.”

Khloe wants everyone to know that she is "not infertile and that she is tired of discussing the issue."

And this is what pisses me off.  The very definition of infertility is a lack of conception after 12 consecutive months of unprotected sex with a fertile partner.  There are many causes of it, and hormonal imbalances and irregularities are one of the many of them.  She is in denial and it is pissing me off that she won't own this.

Look, I get it.  Nobody likes being labeled, especially by others, and particularly when it's something we find to be negative.  But COME ON!  You can't just say you're not infertile and make it be true!  You've been trying for 3.5 years and haven't gotten pregnant yet!  That's the definition of infertility!

And get this, she does admit that she thinks her difficulty in getting pregnant has helped a lot of other women who are struggling with similar issues.... except for the fact that the entire interview demonstrates that she is completely attempting to separate herself from these women!  She clearly does not want to be identified with women struggling from infertility, so why claim that you are proud to have helped them?!?!?!?

How cowardly and two-faced.

I used to like her, she was my favorite of all three of the Kardashian sisters.  This is an opportunity for her to become an activist and a role-model, and instead she is in denial and diminishes the truth of the struggle that 12% of American women are facing.

Come on Khloe, be brave and own this.  Lead the way for us. Continue bringing awareness to this issue instead of shying away from it.  Help us teach society that this is a medical disease and it is okay to talk about it.  Lead by example.  Show us that it is not something to be ashamed of.  Help us create awareness and demand equality, so that all states will mandate health insurance coverage.  Help us, don't lie to yourself that you are not one of us.  None of us wished this for ourselves either, but you could be a voice for us.  You could do something to further our cause.  Use your celebrity and fame to say the things we are thinking, talking, and blogging about.   Advocate for us.  Speak up for us so that more of us can someday achieve what we are all dreaming of, children and families of our very own, and if nothing else, acceptance and support.

You did great things for animals suffering from in-humane cruelty when you advocated with PETA, now do the same for something that hits even closer to home.  Continue making a name for yourself as the Kardashian with substance, courage, and strength.  Do this for the sisterhood you belong too whether you want to admit it to yourself or not.

Rant over.  I hope she bounces back from the press this interview is currently generating, and I hope it's in a way that supports infertile women, rather than ostracizing them.

May is all about you

Thought I'd post a copy of the monthly e-newsletter that RESOLVE sends out to anyone on it's mailing list.  If you'd like to sign up for their mailing list, visit the RESOLVE website.

A monthly reminder that RESOLVE is working to improve the lives of people diagnosed with infertility.

National Infertility Awareness Week® 2013 was a resounding success! Once again the infertility community came together to change the conversation about infertility. “Join the Movement” was embraced by thousands of professionals, volunteers, and RESOLVE community members. Our collective efforts reached millions with information about the disease of infertility. Thank you to all who participated! In May we turn our focus from raising public awareness to helping you. You are the reason RESOLVE exists, and you keep RESOLVE going. You have connected with RESOLVE because you either value RESOLVE’s programs and services or you care about the people we serve. Read on to learn what RESOLVE is doing for you. And reference the sidebar for tips for how to handle Mother’s Day. RESOLVE's Advocacy Day brings largest infertility group to Washington, D.C.  Today, RESOLVE and more than 115 infertiliity advocates are in Washington, D.C. talking to Members of Congress about issues important to the infertility community. You can make an impact right from your home! Call Congress today! It takes 5 minutes. Click here for details! Send an email to Congress and ask them to support the Family Act and a bill to help wounded veterans get infertility coverage. By adding your voice to the efforts of those on Capitol Hill today, you can increase our impact and make a real difference for those that need financial relief for infertility treatments. You will make a difference. RESOLVE Support Groups: You make them happenWe have added 8 support groups in 2013, bringing our current total to 163 nationwide! Thank you to all the volunteers who make support groups possible. May is the perfect month to take charge of your infertility journey and do something for yourself. Find a support group near you. National Infertility Awareness Week® Highlights NIAW in the news RESOLVE in the news Personal stories from the community Bloggers respond to "Join the Movement" Thank you to family building professionals and volunteers who held more than 100 events nationwide in an effort to raise awareness. And thank you to all of our NIAW Sponsors. May 2013  Connect with RESOLVE         Tips for Dealing with Mother’s Day Advice from the Community Advice from RESOLVE Make the Day Your Own We Are Your Support System Attend a 2013 RESOLVE Walk of Hope! Houston - May 18th Washington, D.C. - June 22nd   Your 2013 Checklist Join a Support Group Start a Support Group Get the Newsletter Walk of Hope  Update Your Profile Read the Policy Blog Download a Podcast Do We Have Your Current Information? With so many exciting events, support programs, and important information available, RESOLVE wants to make sure we are sending you the information you need. Please take a moment to review your preferences so that we can serve you better and update our database.

Contact RESOLVE today Phone: 703.556.7172 Fax: 703.506.3266 RESOLVE: The National Infertility Association 1760 Old Meadow Rd., Suite 500 McLean, VA 22102 Connect With Us: Important Information Infertility Diagnosis Family Building Options Insurance Coverage Find RESOLVE Near You Support and Services Find a Support Group Online Support Community HelpLine Find a Professional

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Thoughts on Mother’s Day

There are many good reasons to celebrate Mother’s Day—it can be a day to honor your own mother. One day out of the entire year to thank, honor and celebrate all the sacrifices women make for their families. It should be about love and families.

And there are a lot of good reasons that many do not like Mother's Day too—for me, Mother’s Day is hard because it is a day-long reminder that my husband and I have been struggling from infertility for over 4.5 years.  There are many others who share my sorrow today.  Just google infertility blogs, news, and websites to find many beautiful posts, articles, poems, advice and other information reminding society not to forget about the infertile on Mother's Day.

But it is not just childless infertile women who find mother’s day to be bitterly sad. What about all these other women who dread Mother’s Day?

• Anyone who has lost his or her mother? 
• Those who have lost a child? 
• Those who have not yet found the right partner to start their family with? 
• Those who are estranged from, or have difficult relationships with, their mothers or their children? 
• Those who have disabled children, who cannot make those sweet homemade cards, say “I love you,” or give loving hugs and kisses to their mommy? 
• Those women who struggled for years to create their families and even once they had children, still cannot forget the pain that this particular day used to make them feel. 

This day can be difficult for many women, and men too. To all of you who are struggling today, I want to tell you it is okay not to celebrate. It is okay to take care of yourself today. It is okay to treat today like any other day. It is also okay if you do want to celebrate, whether it be your mother, your children, your memories, or your own strength. Whatever you need to do today, it is okay. And you will be okay too. This day shall pass soon enough and everything will be okay tomorrow.

A Little Laughter to Ease the Pain of Mother's Day

For anyone dealing with infertility, Mother’s Day can be a very difficult day to cope with. In anticipation of tomorrow's holiday, I am reposting a 2011 blog post from the author of 999 Reasons to Laugh at Infertility.

"Perhaps it would be just a bit easier if we could re-name the holiday to something that didn’t remind us of moms and babies. Here are some suggestions for re-naming Mother’s Day: 

• Women who are not on Clomid Day
• International working ovaries Day
• Bratty toddlers and their Mother’s Day
• Her loins really procreated Day
• Please don’t post your Mother’s Day photos on Facebook Day
• A vaginal and brunch celebration Day
• Sperm and egg conceived Day
• She ovulated Day
• Happy pre and post-menopausal Day
• Overpriced chocolates and flowers Day
• You’re not my real Mother Day

…or how about Mother’s and Mother’s-in-Waiting Day."

**********************************

These are pretty funny, and finding reasons to laugh about infertility does help to ease the pressure that this day brings.  This day can be a national reminder of everything we have wished for, lost, never had, worked for, despaired over, fought for and because of, and physically and emotionally hurt from.  This is something most of us feel every day, but on Mother's Day, a day when everyone else is happily celebrating their own mothers or children, the infertile can be overwhelmed by facing all of their experiences and feelings at once.  It can be too much.

An article by Deborah S. Simmons, PhD, LMFT published in the Spring 2013 RESOLVE newsletter and posted on their website suggests letting this day become "your own personal Empowerment Day."

As the article said, "For many who are undergoing fertility treatment and family building, this manufactured holiday can generate anxiety, dread, and anger. You want to be one of the people being celebrated, but you are not there yet.

...You may not feel that you have many choices about fertility treatment, but you absolutely do have choices about how you approach Mother's Day."

Rather than a day of “Why?” let this become a day of “How?” Ask yourself:

“How am I doing on my journey to parenting?”
“How do I need to change my perspective or treatment protocol?”
“How would I LIKE to spend the day?"

The article goes on to say:

"Let this be a decision day about where you are in your life, not just in your attempts to conceive. Let this be a day that is all about you. Embrace self-care as part of your quest to be a mother.

Did you know that you do not have to attend celebrations, even though you have been asked or even if someone demanded you attend? What would you like to do? Being honest does not make you Debbie Downer. It makes you human, and real, and a person. Here’s a truth—someone else may not like you making a different kind of decision, but you will do better. You have absolute permission to stay in bed the entire day, to cry, and to breathe.  

... You can also choose to engage in celebration of your own mother. This year, find a way to do so that fits with your love for her and for yourself. In whatever ways you choose to spend that day, empower yourself to be the beautiful person you were before your fertility journey began and the person you will be after your fertility challenges are resolved."

I'm glad to see that this article reinforces that it is okay to NOT CELEBRATE Mother's Day with others.  At first I felt kind of guilty that B & I didn't make plans to visit our own mothers or grandmothers this year.  We planned ahead and sent them all flowers or gifts to make sure they knew we were thinking of them and appreciating them and honoring them, but now as this day draws closer, we don't really have to focus too much on it or draw much attention to it.  It can be just another day for us.  And honestly, it would have had to be a huge production for us as all of our family lives 2-4 hours away, so it would have been a weekend-long road-trip making multiple stops at several family gatherings.  For us, no holidays are a simple "afternoon over at Grandma's" and Mother's Day would be no exception.  

So this year, like last, we are staying home with our dogs and having a day together, just the 4 of us, doing whatever we want and not really directing any attention to the day at all.  This is what's right for us right now.  There is no telling what future holidays will bring, but for now, we will just be happy at home together and that's okay.

In regards to the above article, as it turns out, the author, Deborah S. Simmons, has been a member of the American Society for Reproductive Medicine for 15 years and is the co-owner of Partners in Healing of Minneapolis.  I am originally from MN and most of my family is still there, so it's kind of neat to see that someone from the Twin Cities is writing for a cause and is such an expert in an area that I spend so much of my own time researching and thinking about.  Kind of neat I think.

10 Things You Should Not Say To Someone Going Through Infertility Treatments

In celebration of National Infertility Awareness Week, Liz Kozak, writing for the Huff Post's Parenting Blog published the following article on April 28th, which offers a list of what not to say to someone going through fertility treatments.

Early in 2012, I had published a page on this blog about what not to say to your infertile friend, and I imagine that B & I might be just as sensitive to some of the comments outlined below if everything goes as planned and we can find way to finance IVF in 2014.  So, without any further opinions from me, please read, learn, and enjoy!

"Why don't you just adopt?"

I may choose adoption down the line, but my desire to have a biological child is the same as any of the other 800 bazillion women out there getting pregnant and starting families. So, why don't you adopt some manners?

"Just take it as the universe's sign you're not meant to have kids."

Be honest here. Haven't you ever seen a pregnant, smoking woman riding a motorcycle without a helmet while eating sushi -- tuna, no less -- and thought, "Really? She's going to be a mom?" Not everyone with children is fit to be a mother. The universe might not know that, but I do.

"Isn't that really expensive?"

Yes, it is. While we're talking about it, how much was that five-bedroom house you just bought, and how much did you throw down for that Lexus? My money is none of your beeswax, just like yours is none of mine. Unless you're treating at Panera the next time we meet for salads, in which case, thank you in advance.

"You already have one child. Why do you need another?"

This is not my situation, but I've heard this doozy gets thrown around a lot. A lot of parents want more than one child, mostly so family team sports can have an even number of players. Also, so there is more than one person to decide one day that it's best to move you into an old folks' home.

"Are you going to be like Octomom?"

Yes; yes I am. I am going to be exactly like her. In every way. I'm so glad to be having a conversation with someone who really gets me.

"Maybe you're just too old to have a baby."

You're never too old to give up on your dreams. You still haven't given up on wearing leggings as pants, and that has nothing to do with age. Just poor taste. So, thank you for inspiring me to reach for the stars!

"I bet when you stop with the treatments, you'll get pregnant."

OMG! I am going to get my Harvard-trained physician on the phone right now and let him know you've cracked the case. The conversation will go something like this: "Doc? It's me. Listen, we've gotta cancel the IVF. That's right. I know I have 18 follicles ready to burst, but this lady in my book club said the highest success rates do not come from medical advancements, but from doing nothing."

"Just enjoy your freedom!"

I know you truly mean well when you say that. I understand that couples without kids can go on vacations with much less planning than those who do have them. But making the argument that being able to pack up and head to a Sandals resort on a whim is a better place to be in than having rightful heirs to my prized snow globe collection is... wait. Let's call this one a tie.

"I could never give myself all those shots."

Really? Even if you had diabetes? Or were in anaphylactic shock from a stray almond shard and required an EpiPen? I'm not doing this recreationally. There is something wrong with my lady-plumbing, and I am taking medication to try to correct it. And it actually hurts less than the mental anguish I'm suffering as a result of your ignorance.

"Just relax and you'll get pregnant."

So, it's my fault, huh? And all this time I thought it was because my high FSH levels were indicating that something might be off with my egg reserve. You should really share this little nugget of wisdom with people on the kidney donor list, too. I they'll find it really helpful. Also, you win a seasonal fruit basket for being the 1,000th person to ever say this to me.

And the #1 thing you should absolutely say to someone going through infertility treatments:

"I support you."

Podcast: Taming the Twin Trend from Infertility

This podcast is a couple years old (March 30, 2011), but I came across it on the RESOLVE website and decided to check it out.

I agree that people are seeing twins more and more, not even just in the popular media with celebrities, but with everyday people all around them.  Of course people struggling with infertility would feel comfortable hedging their bets with the risk of twins, rather than just transferring one embryo, which would be safer for the fetus(es) and eventual babies/children. It's funny that I say "hedgin their bets," because this whole world of infertility and ART treatments really is a gamble, and many couples get burned in the game, losing money, time, sanity, and the only sure-thing in all this is stress and heartache.  For the lucky ones, the risk is worth it and they graduate out of infertility into parenthood, one way or another.

The part that scares me is that whenever people try to warn me about how difficult multiples will be, I always just think about the cost of having two the same age at the same time, and the stress and time management of it all.  I always brush it off and declare that if anyone can handle multiples, its me!  I am the oldest of 4 kids and grew up living in an in-home daycare.  "I got this," I think to myself when imagining myself surrounded by my adorable like-dressed twins or even triplets.  I've never considered the health risks, medical costs, and heartbreak that could be associated with it.  This podcast kind of opened my eyes and makes me think twice about it.  And I think that's a good thing.  As we get closer to IVF ourselves, I think going in knowing how we feel about every possible outcome is the most important thing.

At this point, if B & I do IVF in 2014, would I choose to do a single or a double/triple embryo transfer?  Unless my health insurance covered it, or if they offered the "two-fer" deal as mentioned in the podcast, I'd probably still elect to transfer as many as my RE will allow, just to increase my odds of a successful live birth.  I'd rather have multiple children who need extra care & attention for a while, then no children ever.  It is so maddening that money and state-mandates on health insurance coverage can play such an important, and honestly, such a deciding factor in all this.  I truly envy those who are able to naturally and easily conceive.  They may think they do, but most of them have no idea what a gift life truly is, and I mean that in the most fundamental meaning of the word.