Infertility Etiquette for NIAW

Infertility Etiquette

Chances are, you know someone who is struggling with infertility. More than five 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. Most infertility treatments involve using hormones, which alter the user's moods. (That statement is like calling a lion a cat-my husband would tell you that the side effect is insanity!) 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. Infertility treatments are expensive, and most insurance companies do not cover the costs. So, in addition to the pain of not conceiving a baby each month, the couple pays out anywhere from $300 to five figures, depending upon the treatment used.

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 parent.

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 Offer Unsolicited Opinions If They Are Trying IVF

On the flip side of the coin, don't offer unsolicited advice to your friends who do choose to try IVF. For many couples, IVF is the only way they will ever give birth to a baby. This is a huge decision for them to make, for all of the reasons I outlined above.

If the couple has resolved any ethical issues, don't muddy the waters. IVF is a gray area in many ethical circles, and many of our moral leaders don't yet know how to answer the ethical questions that have arisen from this new technology. If the couple has resolved these issues already, you only make it harder by raising the ethical questions again. Respect their decision, and offer your support. If you can't offer your support due to ethical differences of opinion, then say nothing.

A couple who chooses the IVF route has a hard, expensive road ahead, and they need your support more than ever. The hormones are no cakewalk, and the financial cost is enormous. Your friend would not be going this route if there were an easier way, and the fact that she is willing to endure so much is further proof of how much she truly wants to parent a child. The hormones will make her more emotional, so offer her your support and keep your questions to yourself.

Don't Play Doctor

Once your infertile friends are under a doctor's care, the doctor will run them through numerous tests to determine why they aren't able to conceive. There a numerous reasons that a couple may not be able to conceive. Here are a few of them:

Blocked fallopian tubes
Cysts
Endometriosis
Low hormone levels
Low "normal form" sperm count
Low progesterone level
Low sperm count
Low sperm motility
Thin uterine walls

Infertility is a complicated problem to diagnose, and reading an article or book on infertility will not make you an "expert" on the subject. Let your friends work with their doctor to diagnose and treat the problem. Your friends probably already know more about the causes and solutions of infertility than you will ever know.

You may feel like you are being helpful by reading up on infertility, and there is nothing wrong with learning more about the subject. The problem comes when you try to "play doctor" with your friends. They already have a doctor with years of experience in diagnosing and treating the problem. They need to work with and trust their doctor to treat the problem. You only complicate the issue when you throw out other ideas that you have read about. The doctor knows more about the causes and solutions; let your friends work with their doctor to solve the problem.

Don't Be Crude

It is appalling that I even have to include this paragraph, but some of you need to hear this-Don't make crude jokes about your friend's vulnerable position. Crude comments like "I'll donate the sperm" or "Make sure the doctor uses your sperm for the insemination" are not funny, and they only irritate your friends.

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 Gossip About Your Friend's Condition

Infertility treatments are very private and embarrassing, which is why many couples choose to undergo these treatments in secret. Men especially are very sensitive to letting people know about infertility testing, such as sperm counts. Gossiping about infertility is not usually done in a malicious manner. The gossipers are usually well-meaning people who are only trying to find out more about infertility so they can help their loved ones.

Regardless of why you are sharing this information with someone else, it hurts and embarrasses your friend to find out that Madge the bank teller knows what your husband's sperm count is and when your next period is expected. Infertility is something that should be kept as private as your friend wants to keep it. Respect your friend's privacy, and don't share any information that your friend hasn't authorized.

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.

Remember Them on Mother's Day

With all of the activity on Mother's Day, people tend to forget about women who cannot become mothers. Mother's Day is an incredibly painful time for infertile women. You cannot get away from it-There are ads on the TV, posters at the stores, church sermons devoted to celebrating motherhood, and all of the plans for celebrating with your own mother and mother-in-law.

Mother's Day is an important celebration and one that I relish now that I am a mother. However, it was very painful while I was waiting for my baby. Remember your infertile friends on Mother's Day, and send them a card to let them know you are thinking of them. They will appreciate knowing that you haven't "forgotten" them.

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.

National Infertility Awareness Week

Please re post the above and share the word of National Infertility Awareness Week.

I'm sure so many of us never knew what this was when we first started TTC, but now that we do we must get the word out and get others and insurance companies to recognize infertility is a medical condition that needs just as much assistance and treatment as anything else!

Special thanks to The Pifer's Journey for allowing me to copy and paste from her amazing blog this week to help spread the word.

Infertility 101: Get the facts

Myth: Infertility is a women's problem.

Fact: This is untrue. It surprises most people to learn that infertility is a female problem in 35% of the cases, a male problem in 35% of the cases, a combined problem of the couple in 20% of cases, and unexplained in 10% of cases. It is essential that both the man and the woman be evaluated during an infertility work-up.

Myth: Everyone seems to get pregnant at the drop of a hat.

Fact: More than five million people of childbearing age in the United States experience infertility. When you seek support, you will find that you are not alone. Join RESOLVE, a support group, or talk with others who are struggling to build a family, so that you won't feel isolated.

Myth: It's all in your head! Why don't you relax or take a vacation. Then you'll get pregnant!

Fact: Infertility is a disease or condition of the reproductive system. While relaxing may help you with your overall quality of life, the stress and deep emotions you feel are the result of infertility, not the cause of it. Improved medical techniques have made it easier to diagnose infertility problems.

Myth: Don't worry so much -- it just takes time. You'll get pregnant if you're just patient.

Fact: Infertility is a medical problem that may be treated. At least 50% of those who complete an infertility evaluation will respond to treatment with a successful pregnancy. Some infertility problems respond with higher or lower success rates. Those who do not seek help have a "spontaneous cure rate" of about 5% after a year of infertility.

Myth: If you adopt a baby you'll get pregnant!

Fact: This is one of the most painful myths for couples to hear. First it suggests that adoption is only a means to an end, not an happy and successful end in itself. Second, it is simply not true. Studies reveal that the rate for achieving pregnancy after adopting is the same as for those who do not adopt.

Myth: Why don't you just forget it and adopt? After all, there are so many babies out there who need homes!

Fact: For many, adoption is a happy resolution to infertility. But choosing how to build your family is a very personal decision. Learning about all the ways to build a family can open your eyes to options you may not have thought of as a possibility. Education is key to finding resolution.

Myth: Maybe you two are doing something wrong!

Fact: Infertility is a medical condition, not a sexual disorder.

Myth: My partner might leave me because of our infertility.

Fact: The majority of couples do survive the infertility crisis, learning in the process new ways of relating to each other, which deepens their relationship in years to follow.

Myth: Perhaps this is God's way of telling you that you two aren't meant to be parents!

Fact: It is particularly difficult to hear this when you are struggling with infertility. You know what loving parents you would be, and it is painful to have to explain to others that you have a medical problem.

Myth: Infertility is nature's way of controlling population.

Fact: Zero population growth is a goal pursued in a time of world overpopulation, but it still allows for couples to replace themselves with two children. Individuals or couples can certainly elect the option to be childfree or to raise a single child. Infertility, for those who desire children, denies them the opportunity to choose.

Myth: I shouldn't take a month off from infertility treatment for any reason... I just know that this next month will be THE one!

Fact: It is important periodically to reassess your treatment and your parenting goal. Continuity in treatment is important, but sometimes a break can provide needed rest and renewal for the next steps.

Myth: I'll be labeled a 'trouble maker' if I ask too many questions.

Fact: The physician/patient team is important. You need to be informed about what treatments are available. What is right for one couple may not be right for another, either physically, financially, or emotionally. Don't be afraid to ask questions of your doctor.

A second opinion can be helpful. If needed, discuss this option with your physician.

Myth: I know I'll never be able to stop treatment until I have a pregnancy.

Fact: Pregnancy is not the only pathway to parenthood. You may begin to think more about parenthood than about pregnancy. You may long for your life to get back to normal. You may consider childfree living or begin to think of other ways to build a family.

Myth: I've lost interest in my job, hobbies, and my friends because of infertility. No one understands! My life will never be the same!

Fact: Infertility is a life crisis -- it has a rippling effect on all areas of your life. It is normal to feel a sense of failure that can affect your self-esteem and self-image. You will move through this crisis. It is a process, and it may mean letting go of initial dreams. Throughout this process, stay informed about the wide range of options and connect with others facing similar experiences.

Ready to Go, with no planned Destination

My P4 came back at a 13.1 for P+7 and that is the best it has ever been measured. My doc wants to increase my Femera dose if this cycle doesn't work, so it will be a total of 25mg. Tim wants to talk to him first so we are seeing him Monday morning. Tim has questions that I just don't have the answers for. Since NaPro is very different from standard infertility treatment, I just don't know what the next steps are. I will say that I agree with Tim in wanting to know what is going to happen. We need to make a decision soon about what is going to happen. I don't want to be doing the same thing in a year's time. What is really sad is that this cycle is my last chance to have a baby in 2009 (edd would be 12/21). I don't normally care, but the conversation was brought up and it just struck a cord for me.

Tim and I have talked about starting the adoption process, but we would have to stop the fertility treatments first so we could concentrate at the task at hand. For how much I want to be able to give birth to my child, I want to be a mother more, so if that is what we end up doing, I will be happy.

Here I go again

I went for my P4 test today on my third HCG injects with Femera cycle. I am praying for a decent number after last cycle's terrible P+11 bloodwork draw of 1.1; the thing is that I still didn't start bleeding for another 5 days later. I have realized that I really need to get back in the habit of taking my meds on time and being consistant in both that and taking my blood sugar draws. I can only hope that I will get better soon because I have, not because I want to. (In other words, if I were pregnant). I also want to start blogging more on a regular basis, even if it is just a line or two.

April Fool's Day sucks

I hate April Fool's Day. It has never been a good day for me. Usually it is harmless pranks and me being gullible to fall for them. This the "joke" was on me and I fell apart, literally.

Not only did one friend find out the sex of her "miracle" baby (I have reservations about her being infertile) and then another friend of mine announced, on facebook no less, that she was pregnant again (their little girl just turned one) and what really sucks is that her and her DH got married a week before Tim and I did. Lastly, a coworker announces that she is 5 months pregnant and only recently went to the doctor to confirm (that is something you hear about on TV, not in real life), which would make it a honeymoon baby. She had no reason to believe she was pregnant since she said missing several months was normal to her. That is not normal people, that means something is wrong. That whole situation sucks, especially since I had a gut feeling she was going to be pregnant before me. This is never fun, now that I know people who are on their 2nd pregnancies in the same time frame that I am still trying to have one.

Anyway, let's just say I literally broke down crying on the floor when I got all this news within a single 24 hour period. Normally I can handle news like that, be numb to the fact that I am jealous as hell, but a triple punch like that pushed me over the edge. I don't remember any other time when I completly broke down in tears over someone else's announcement.

I just have to keep reminding myself that just because "X" is pregnant, it has no direct bearing on why I am not pregnant.