Wednesday, April 4, 2012

Infertility Etiquette

If you know someone who is struggling with infertility, please read the very important information below (via RESOLVE) to learn what not to say and how to best support your friend or family member during this difficult time. To make this more digestable, I've included the most helpful tips (in my humble opinion).

Chances are, you know someone who is struggling with infertility. More than seven million people of childbearing age in the United States experience infertility. Yet, as a society, we are woefully uninformed about how to best provide emotional support for our loved ones during this painful time. 

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.

As the couple moves into infertility treatments, the pain increases while the bank account depletes. The tests are invasive and embarrassing to both parties, and you feel like the doctor has taken over your bedroom. And for all of this discomfort, you pay a lot of money.

A couple will eventually resolve the infertility problem in one of three ways:
  • They will eventually conceive a baby.
  • They will stop the infertility treatments and choose to live without children.
  • They will find an alternative way to parent, such as by adopting a child or becoming a foster
Reaching a resolution can take years, so your infertile loved ones need your emotional support during this journey. Most people don't know what to say, so they wind up saying the wrong thing, which only makes the journey so much harder for their loved ones. Knowing what not to say is half of the battle to providing support.

Don't Tell Them to Relax
Everyone knows someone who had trouble conceiving but then finally became pregnant once she "relaxed." Couples who are able to conceive after a few months of "relaxing" are not infertile. By definition, a couple is not diagnosed as "infertile" until they have tried unsuccessfully to become pregnant for a full year. In fact, most infertility specialists will not treat a couple for infertility until they have tried to become pregnant for a year. This year weeds out the people who aren't infertile but just need to "relax." Those that remain are truly infertile.

Comments such as "just relax" or "try going on a cruise" create even more stress for the infertile couple, particularly the woman. The woman feels like she is doing something wrong when, in fact, there is a good chance that there is a physical problem preventing her from becoming pregnant.

These comments can also reach the point of absurdity. As a couple, my husband and I underwent two surgeries, numerous inseminations, hormone treatments, and four years of poking and prodding by doctors. Yet, people still continued to say things like, "If you just relaxed on a cruise . . ." Infertility is a diagnosable medical problem that must be treated by a doctor, and even with treatment, many couples will NEVER successfully conceive a child. Relaxation itself does not cure medical infertility.

Don't Minimize the Problem
Failure to conceive a baby is a very painful journey. Infertile couples are surrounded by families with children. These couples watch their friends give birth to two or three children, and they watch those children grow while the couple goes home to the silence of an empty house. These couples see all of the joy that a child brings into someone's life, and they feel the emptiness of not being able to experience the same joy.

Comments like, "Just enjoy being able to sleep late . . . .travel . . etc.," do not offer comfort. Instead, these comments make infertile people feel like you are minimizing their pain. You wouldn't tell somebody whose parent just died to be thankful that he no longer has to buy Father's Day or Mother's Day cards. Losing that one obligation doesn't even begin to compensate for the incredible loss of losing a parent. In the same vein, being able to sleep late or travel does not provide comfort to somebody who desperately wants a child. 

Don't Say There Are Worse Things That Could Happen
Along the same lines, don't tell your friend that there are worse things that she could be going through. Who is the final authority on what is the "worst" thing that could happen to someone? Is it going through a divorce? Watching a loved one die? Getting raped? Losing a job? 

Different people react to different life experiences in different ways. To someone who has trained his whole life for the Olympics, the "worst" thing might be experiencing an injury the week before the event. To someone who has walked away from her career to become a stay-at-home wife for 40 years, watching her husband leave her for a younger woman might be the "worst" thing. And, to a woman whose sole goal in life has been to love and nurture a child, infertility may indeed be the "worst" thing that could happen. 

People wouldn't dream of telling someone whose parent just died, "It could be worse: both of your parents could be dead." Such a comment would be considered cruel rather than comforting. In the same vein, don't tell your friend that she could be going through worse things than infertility.

Don't Say They Aren't Meant to Be Parents
One of the cruelest things anyone ever said to me is, "Maybe God doesn't intend for you to be a mother." How incredibly insensitive to imply that I would be such a bad mother that God felt the need to divinely sterilize me. If God were in the business of divinely sterilizing women, don't you think he would prevent the pregnancies that end in abortions? Or wouldn't he sterilize the women who wind up neglecting and abusing their children? Even if you aren't religious, the "maybe it's not meant to be" comments are not comforting. Infertility is a medical condition, not a punishment from God or Mother Nature.

Don't Ask Why They Aren't Trying IVF
In vitro fertilization (IVF) is a method in which the woman harvests multiple eggs, which are then combined with the man's sperm in a petri dish. This is the method that can produce multiple births. People frequently ask, "Why don't you just try IVF?" in the same casual tone they would use to ask, "Why don't you try shopping at another store?"

Don't Complain About Your Pregnancy
This message is for pregnant women-Just being around you is painful for your infertile friends. Seeing your belly grow is a constant reminder of what your infertile friend cannot have. Unless an infertile women plans to spend her life in a cave, she has to find a way to interact with pregnant women. However, there are things you can do as her friend to make it easier.

The number one rule is DON'T COMPLAIN ABOUT YOUR PREGNANCY. I understand from my friends that, when you are pregnant, your hormones are going crazy and you experience a lot of discomfort, such as queasiness, stretch marks, and fatigue. You have every right to vent about the discomforts to any one else in your life, but don't put your infertile friend in the position of comforting you.

Your infertile friend would give anything to experience the discomforts you are enduring because those discomforts come from a baby growing inside of you. When I heard a pregnant woman complain about morning sickness, I would think, "I'd gladly throw up for nine straight months if it meant I could have a baby." When a pregnant woman would complain about her weight gain, I would think, "I would cut off my arm if I could be in your shoes."

I managed to go to baby showers and hospitals to welcome my friends' new babies, but it was hard. Without exception, it was hard. Stay sensitive to your infertile friend's emotions, and give her the leeway that she needs to be happy for you while she cries for herself. If she can't bring herself to hold your new baby, give her time. She isn't rejecting you or your new baby; she is just trying to work her way through her pain to show sincere joy for you. The fact that she is willing to endure such pain in order to celebrate your new baby with you speaks volumes about how much your friendship means to her.

Don't Treat Them Like They Are Ignorant
For some reason, some people seem to think that infertility causes a person to become unrealistic about the responsibilities of parenthood. I don't follow the logic, but several people told me that I wouldn't ache for a baby so much if I appreciated how much responsibility was involved in parenting.

Let's face it-no one can fully appreciate the responsibilities involved in parenting until they are, themselves, parents. That is true whether you successfully conceived after one month or after 10 years. The length of time you spend waiting for that baby does not factor in to your appreciation of responsibility. If anything, people who have been trying to become pregnant longer have had more time to think about those responsibilities. They have also probably been around lots of babies as their friends started their families.

Perhaps part of what fuels this perception is that infertile couples have a longer time to "dream" about what being a parent will be like. Like every other couple, we have our fantasies-my child will sleep through the night, would never have a tantrum in public, and will always eat his vegetables. Let us have our fantasies. Those fantasies are some of the few parent-to-be perks that we have-let us have them. You can give us your knowing looks when we discover the truth later.

Don't Push Adoption (Yet)
Adoption is a wonderful way for infertile people to become parents. (As an adoptive parent, I can fully vouch for this!!) However, the couple needs to work through many issues before they will be ready to make an adoption decision. Before they can make the decision to love a "stranger's baby," they must first grieve the loss of that baby with Daddy's eyes and Mommy's nose. Adoption social workers recognize the importance of the grieving process. When my husband and I went for our initial adoption interview, we expected the first question to be, "Why do you want to adopt a baby?" Instead, the question was, "Have you grieved the loss of your biological child yet?" Our social worker emphasized how important it is to shut one door before you open another.

You do, indeed, need to grieve this loss before you are ready to start the adoption process. The adoption process is very long and expensive, and it is not an easy road. So, the couple needs to be very sure that they can let go of the hope of a biological child and that they can love an adopted baby. This takes time, and some couples are never able to reach this point. If your friend cannot love a baby that isn't her "own," then adoption isn't the right decision for her, and it is certainly not what is best for the baby.

Mentioning adoption in passing can be a comfort to some couples. (The only words that ever offered me comfort were from my sister, who said, "Whether through pregnancy or adoption, you will be a mother one day.") However, "pushing" the issue can frustrate your friend. So, mention the idea in passing if it seems appropriate, and then drop it. When your friend is ready to talk about adoption, she will raise the issue herself.

So, what can you say to your infertile friends? Unless you say "I am giving you this baby," there is nothing you can say that will erase their pain. So, take that pressure off of yourself. It isn't your job to erase their pain, but there is a lot you can do to lesson the load. Here are a few ideas.

 Let Them Know That You Care
The best thing you can do is let your infertile friends know that you care. Send them cards. Let them cry on your shoulder. If they are religious, let them know you are praying for them. Offer the same support you would offer a friend who has lost a loved one. Just knowing they can count on you to be there for them lightens the load and lets them know that they aren't going through this alone.

Support Their Decision to Stop Treatments
No couple can endure infertility treatments forever. At some point, they will stop. This is an agonizing decision to make, and it involves even more grief. Even if the couple chooses to adopt a baby, they must still first grieve the loss of that baby who would have had mommy's nose and daddy's eyes.

Once the couple has made the decision to stop treatments, support their decision. Don't encourage them to try again, and don't discourage them from adopting, if that is their choice. Once the couple has reached resolution (whether to live without children, adopt a child, or become foster parents), they can finally put that chapter of their lives behind them. Don't try to open that chapter again.


Shannon Elise said...

Thank you for posting this Jess. I am doing the adoption grieving right now. I know it is the right decision for us, but I mourn the fact that I will never be pregnant and that our child will not have our genes. Like you said, it is like grieving over losing a loved one. There is a process and there is nothing anyone else can say or do, except to be there with open arms and non-judgmental support.

Annabelle said...

Haha I posted a link to this exact information on my blog today! Small world hey! It's great info that I may send to some people I know!

EndoJoanna said...

Wow, I think we must all be on the same wave length, because I also posted something on how best to communicate with an infertile! This is an excellent post and I thank you for sharing it! Infertility is a life altering medical diagnosis that will take a lifetime to adjust to. Thanks again for sharing this.

Katie said...

this is so good. and I want some people around me to read it! Many people have told me "Once you stop "trying" you may get pregnant" and I want to tell them (and sometimes do) that No I will not and have been told that I am physically not able to get pregnant on my own, at least for the time being. It is so frustrating. And as there is nothing to compare two problems to each other, you gave some great examples of how you wouldn't treat someone/or say to someone experiencing other kinds of grief. My brother told one of his friends that we may do IVF and she came up to me and told me sorry that the other things weren't successful, but then so casually said "Oh, so you are just going to do the thing where they make the baby outside and put it in you?" as if it were as simple as going to the dr. one day and getting pregnant.

(Sorry this is incredibly long! Just know I appreciated reading this and hope you have some people in your life that have responded and supported you as you have needed it.)

Amanda said...

I'm loving your blog!!! Found you via Stealing Baby Kisses! My husband and I are infertile as well and have just started undergoing IUI treatments! I'm praying for you and your husband!

newbie said...

This is a wonderful resource - I sent it to my family when we first started experiencing infertility and they found it really helpful. Thanks for sharing it with others.

Samantha said...

Wow, What an eye opening post. I never thought about this because I am only 21 so no one in my friend circle is having babies or even trying. But it is so interesting and informative how you wrote this. I also think this post goes hand in hand with any greif or problem in their life, if its a problem to your friend it's a problem whether you think it is or not, there is only one judge in the life, I am so proud of you for being so strong and such a idol in that group of people in the blogging world. There is not many blogs like yours and I love it, if my boyfriend and I ever do get married and cannot have children this is so nice to look at and even realize how lucky you are to conceive children. Have you decided to adopt? or did I read that wrong?

Tammy @ Lemons, Avocados & the Bay said...

Thank you for sharing this. It really gave me an important perspective into what some of my best friends are experiencing right now.

Megha Varshini said...

vow.. hats off.. u actually put together all the facts. great post.

Holly Mowery said...

Thank you for writing this thoughtful piece. We are a year removed from our 2 year heart wrenching journey and I'm still struggling to find piece. We've held off our adoption plans bc I could not come to accept my grief and then life happened. I'm not sure where our journey leads to next, but I feel stronger knowing how to handle situations now. I hope this article reaches many and is able to help eliminate some of the responses I still get to this day. People honestly don't know how much it really hurts, but I just smile and go on.

Anonymous said...

This was so...touching. I don't even know how I stumbled onto it, but I am glad I did.

K. Bowman said...

This is good advice! My husband and I went through fertility procedures for 7 years after trying for at least that long on our own! We lost a twin pregnancy but are now blessed with beautiful twin girls. We had really good support from our family and friends, but once in a while someone would come up with something that was slightly inappropriate. Good information!

Mrs007Moore said...

Thank you for this beautiful post. My thoughts exactly. Hubby and I have been trying for the 9 years we have been married. We have had testing done, and told our only "chance" is IVF which is financially not possible at this time. For 9 years I have heard the same comments.

In the mean time I continue to genuinely be happy and embrace the pregnancies of family and friends. I can only imagine the happiness they feel. But at the same time many of the people in my life have considered their children to be accidents, or unwanted, most unplanned in the least. Those instances its a harder pill to swallow.

Melissa said...

This is perfect. Thank you for writing this. We just made 12 months of trying... & I am heartsick. Nice to have someone who gets it!

I especially loved the "relax" part. So true!

Libby said...

Thank you for posting this. Wow I wish I would have had this to read when we were going through our heartbreak of finding out we could not have children many years ago and had a community of support. The things some people would say was like pouring acid on raw skin. I felt so alone so thank you for having this blog and posting this great information. I pray the Lord will comfort your hearts and fill your arms. I am thankful for the very few who understood.

Alicia said...

I recently saw this on another blog - so important. I'm definitely going to share this! Thanks Jessah!

Jess said...

Excellent post! I found your site via Pinterest and plan to repost. Thank you for pulling these valuable! I struggled with infertility for years and was always surprised at how many of my pregnant friends didn't understand that their complaints about being tired or big were hurtful. I would have given anything to be tired and big!

Jessica said...

It is a very hard thing to go through. My husband and I went through this for 3 long years. Every month was heartache! I always tried to keep a positive attitude but people really annoyed me all the time! I am very lucky that IVF worked twice for us and I have the family I always dreamed of. I wish the same for you.

J and A said...

Thank you so much for posting this. It is a must share.

Christy said...

Thanks for this. While I'm not sure if we are infertile, it is SO FRUSTRATING for friends to keep asking if we're pregnant yet, telling me to "just relax and it will happen", and for close friends to not invite me to gatherings because I don't have children...or worse, to talk down to me to tell me that one day I will understand how hard it is to be a mom. I'm 34 and every time I see a friend post their ultrasound on facebook or "bump" photos, I am happy for them, but also feel sad that we have no ultrasound or bump to post. It's also taught me that if and when we do conceive that we won't be posting ultrasounds and bump photos on facebook...a phone call to close friends and family is adequate. Good luck to you in everything!

Natasha said...

Beautifully written. Thank you.

Anonymous said...

I cried while reading this. thank u for writing this. it helps to read sensitive words in a time in our lives when it feels so hopeless.

Stephanie Cummings said...

There is one that I hear often that tends to get under my skin. They will say, "You can take ( insert their child's or children's names here) whenever you want!!" I understand they are trying to be kind or funny, but if they only knew....

Thanks for the post!

Anonymous said...

I have heard two extremely helpful comments on my journey. One was from a coworker/friend a few months into our journey. We had been trying for 4-5 months and, of course, did not know we were infertile yet. I made a comment along the lines of, "I know we haven't been trying that long, and others have it much worse, but..." She replied, "It is a long time." It could have come across differently to other people, but I knew she was just acknowledging that what we were going through was tough. Another was my doctor looking me straight in the eyes and saying, "This stinks. I'm sorry it's happening to you." I'm sure we can all agree that we don't want some magic line that will make us feel better. We just want our pain to be acknowledged and not down-played. You don't need to dwell on it, but don't minimize it, either. Thanks for the great post.

Anonymous said...

As someone who is starting the expensive route of IVF, I thank you for this. It made me feel better knowing I'm not the only one who felt those ways. Thank you.

Anonymous said...

My infertility is a little different. I was able to get pregnant easily with my daughter 12 years ago. Since then, we have not been able to conceive again. It is such a hard thing that even this many years later I struggle with. My daughter has even struggled with this. She has begged us for years for a brother or sister and cries over it too. She hears comments from her friends about why she doesn't have a sibling and that she should be grateful to be an only child. I really think this blog is amazing. I can relate to most of what you said here. Every time a friend or family member announces their pregnany, I tear up, try to keep the tears from falling, put a smile on my face and then cry it all out later when I'm away from them. Thank you for putting this out there to help others understand and help me to see that I'm not alone.

Anonymous said...

I would love to tell anyone struggling with infertility that adoption is not second best. I want to say this in the most honest way possible. We have two biological children and an adopted child but there is NO difference - we love them all the same. I know people say that, but it is absolutely true. We look at the baby and feel as if he were carried by a surrogate perhaps, because he is 100% ours and was always meant to be a part of our family.

Anonymous said...

I myself don't know what it's like to be diagnosed "infertile", but I have lost a child. And after losing one miscarriage and my baby girl, each time it took many months to conceive again. I know months aren't anything compared to years but I do feel like my husband and I got a slight taste of what infertility feels like. And for you to compare the two upset me. There is NOTHING like losing a child. I feel like this post minimized the pain of a bereaved parent. I do appreciate the post though. I have many friends who are dealing with this struggle and it did open my eyes. Thank you for your insight.

Anonymous said...

Thank you so much for posting this ! My infertility started after I had my first child 19 years ago. My second husband and I have been trying but no luck. Ive been on fertility drugs and nothing. If I hear one more time " Are you sure you want to start over with a new baby or " well at least you have one" Im going to scream ! It is hard not knowing why but we pray that God will bless us with a healthy baby. Thanls again !

Anonymous said...

AS one that was "plenty fertile" I always had one friend that was experiencing infertility when I was happily pregnant. Thanks to my special friend that did not make me feel guilty, that I was having a baby while she was not! She was truly happy for me, while going through her own heartache. We supported and loved each other through our different life experiences.

Leighannn said...

This is so needed right now. Each and every single point are exactly right and so very needed when someone is going through something so very painful as infertility

Kvist4 said...

Thank you for sharing. It got me thinking a lot. I agree with so much of it, but I have to add, that I think some of it is also very individual. I personally wouldn't have been without sharing my girlfriends' hardship in pregnancy and motherhood even though I myself was struggling to get pregnant. And boy, was I glad I did when finally, it was my turn to go through nine months of vomiting and anxieties. Just my little thought.

I wish you all the best

Anonymous said...

As someone who lost 3 pregnancies & underwent many failed treatments before moving on to DE IVF only to have 2 DE cycles canceled prior to retrieval, I can completely relate to this post. Often I wished for such an article to help educate family and friends. During the 10 years it took for us to finally become parents, I rarely shared what we were going through but when I did I often got the WORST kinds of responses - they ranged from my MIL trying to "cheer me up" by pointing out all the good things I had going on in my life like sports that I liked (in NO WAY can a hobby or SPORT erase the agony of a miscarriage btw) & then there was my own mother who responded to news of a pregnancy loss with, "How far along WERE you?" (as if because I was only at the end of the first trimester the pregnancy didn't yet count.) When I tried to share with friends who were "childless by choice" they usually responded with, "We never wanted children but if we did we'd just adopt" (as if adoption is THAT easy) or other equally uncomprehending replies. I suffered 3 pregnancy losses (at ages 36,38, and 41.) After the 3rd loss I became convinced that my eggs must be bad & committed to looking for an egg donor, even going on b/c pills to avoid another "unplanned" pregnancy since the last 2 pregnancies (ages 38 and 41) had both happened when I didn't even think I was ovulating.

Moving on to DE was not the quick, easy path the doctors predicted. We chose a donor and she started stims & then on the eve of egg retrieval found out that her grandmother had been diagnosed with muscular dystroph. The geneticist and the RE (when I could get him to return my phone call) both advised canceling the cycle, so we did. I moved on to another RE, chose another donor but this donor (a first timer) didn't respond to stims well enough & the RE advised canceling on D4 of her cycle so we did. Finally, donor #3 gave us the healthy egg that became the embryo (we only transferred 1) into my uterus. (We transferred only one to avoid twins, which are higher risk and in my case were unadvisable due to a uterine fibroid.)

Though my RE told me we had only about a 45% chance that the transfer would lead to a positive pregnancy result, we were lucky that our little embryo "took." I had a healthy, blissful pregnancy during which I ate right, exercised & gained only the expected amount of weight (I was underweight when I conceived, a ten year long vegetarian and life-long non-smoker) and then, 2 days after ceasing the lovenox (a blood thinner) injections that I'd put myself on at the advice of an RE and an RI, I came down with the worst class of HELLP Syndrome (a rare, extreme form of eclampsia). HELLP ruptured my liver and gave me a stroke that put me in a 6 week-long coma. My husband was told to accept the fact that I was going to die. Ultimately, I needed brain surgery, a tracheotomy, $11,000 in blood transfusions, 6 weeks on life support, 6 months in hospitals, and 18 months of cognitive and physical therapies. To say that I'm grateful that we received amazing medical care (paid for by our dual union provided health benefits) and that my daughter and I survived this ordeal is an understatement. However, due to all of this I have no memories of the first 6 months of my daughter's life and did not get to live at home with her during that time.

While I'm immensely grateful for all that went right (my daughter and I survived an illness that often kills mothers and babies) & I have made an excellent recovery, I still grieve all that I missed out on (I never got to know the baby that I had tried so long and hard to have.) Because of this, listening to my MIL's exultant reminiscences about how much fun she had caring for my infant (whom she remembers so vividly since she took care of her during that time) is especially hard for me and sadly, my husband can't seem to understand why I find his mother's reminiscences so hard to bear.

beth seats said...

thanks for making this post. i am sharing it with all my friends and families. again thank you.

Heidi said...

Thank you so much for this post! It is spot-on. I am so tired of being told to "relax" by everyone. It is so hard being infertile! My husband and I start IUI treatment this month.

Karli said...

I received the advice to never invite a woman struggling with infertility to a baby shower. I felt like this would unnecessarily exclude her from many events. I thought a better solution might be to invite her with the explanation that there would be no pressure to come or hurt feelings if she decided not to but I've never struggled with infertility so which do you think would be better?

Ashley {Life on the Parsons Farm} said...

Thank you! This rings all too true.

Sarah said...

Thank you for this. We lost 3 children, one to stillbirth and 2 to miscarriage, then endured 10 years of infertility before we finally adopted our beautiful daughter. The loveliest thing anyone ever said to us during the whole process was "We have no idea what you are going through, so please know that we love you and are praying for you, and if there is anything we can do, don't hesitate to call". That meant more than all the well meaning "stuff" other people filled the silence with.

Anonymous said...

Thank you for sharing this. My husband and I are currently in year two of this struggle. These are great ways to aproach the potentially awkward moment Ina conversation. I know I had a friend who said "I can only imagine how hard this is, and I'm not sure what to say. What do you need to hear?" This was one of the best responses I have had said to me.

When in doubt, ask your friend what he/she needs. (Yes, he. Men grieve and deal with infertility, too. They just don't talk about it like women do.)

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