I've put together two parts to 'what to expect', content that will be recycled hopefully into our NGO website. This part, a compendium of my own experiences and some pithy tips I read on various wonderful infertility blogs, is for friends and family, and the second part is for women who are thinking about fertility treatments and what I wish I knew before I began.
Chances are, you know someone who is struggling with infertility. One in every 8 couples will experience infertility, and this statistic, like other medical conditions, is increasing with modern society (just think about the incidence of cancer or children with egg allergies and eczema). Yet, we remain woefully uninformed about how to best provide emotional support or sympathy for our loved ones during this painful time. Infertility is a pain similar to the grief over losing an identity or a loved one, but it is unique because it is a recurring grief. Infertile people grieve or fear the loss of the baby that they may never know, a child who would have been part of both of them, or a vital part of the family they chose.
With 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 this process of hope and disappointment happens month after month, year after year, until it turns into desperation or bitterness. 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, and you feel like the doctor has taken over your bedroom. And for all of this discomfort, you pay a lot of money. It would not be an exaggeration to say that most infertile couples will easily blow through between $20,000-250,000 on trying to have a baby, or trying to have options.
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, or they will find an alternative way to parent, such as by adopting a child, fostering or using donations of sperm or eggs. Reaching a resolution can take years.
So, if you already know of their situation and struggle, what can you say to your infertile friends? (I'm assuming here that I don't have to state the obvious, which is that you shouldn't imply childless-ness is a problem i.e. "what are you waiting for" or "when will it be your turn?")
Moreover, I actually don't think you need to broach this topic if the situation is not called for; you don't have to address it or tip-toe around it. Friends are more than discussion about one topic and it may not be something you both want to, or should, talk about. I often cringe when I know that a pointed enquiry of "So...how are things..." doesn't refer to anything else.
If it does come up, I sympathise, as it is not easy to be friends with infertiles. They are often prickly, mercurial and very sad people. They have a hyper-sensitive radar about pregnancy and pity. Like anyone who is going through a prolonged rough patch, depending on their medication, cycle and mental state, they will have emotional good and bad days, so never make the mistake of thinking that if they have a good day, their grief is over, or that if I have a bad day, I need psychiatric counselling.
Most people don't know what to say, so they wind up saying the wrong thing. 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 and don't bother — it isn't your job to erase their pain, but there is a lot you can do to give support or comfort. Here are a few ideas.
Don't Tell Them to Relax
Everyone knows someone who had trouble conceiving but then finally became pregnant once she "relaxed." Try not to make the leap to believing it happens when you least expect it — many infertile couples actually never have children, particularly without help. Couples who are able to conceive after a few months of "relaxing" are not infertile.
By definition, a couple is not diagnosed as "infertile", nor will most infertility specialists treat them, until they have tried unsuccessfully to become pregnant for a full or two years. This weeds out the people who aren't infertile but just need to "relax." Those that remain are truly infertile. This isn't the same as the "agonizing" four or six months that you spent getting pregnant, it's more like peeing on a stick over 40 straight negatives, until month-after-month becomes year-after-year.
Comments such as "just relax", "take more holidays!" or "try going on a cruise" create even more stress for the infertile couple, particularly the woman. You should know that you cannot spend your life on holiday and they will still have to come back to the reality and the insecurity of their situation. It trivializes the problem as having such a simple solution that could have avoided surgery, hormone rebalances or inseminations. Saying this will make your infertile friend feel even more frustrated, misunderstood and stupid.
There are also other variations of this same comment, like "don't think so much", "maybe you should do less", "don't be so hard on yourself", generally normative should, or should not comments and advice that, as we know from Psychology 101, may sound logical or even maternal, but can be both grating and unhelpful. The crux is not so much that things would be easier if you didn't over-think them (things would also be easier if we had a spare million dollars, both are true but neither are the point), but rather, how do you get to the point where you think less or where you have a million more dollars?
I find what makes me a better friend is tangibly trying to allow for change, rather than telling them how they should or should not be. You may feel like you've cycled through their many complaints and neurosis and then told them to "relax" or "don't be so down", so you've heard them out and tried to help, but have you really been helpful?
This journey has taught me one important thing and that is that comforting someone requires much more than merely talking to, or at, them. Without assuming you know how they feel or what they can do about it, try the following — acknowledge what they are going through, remind them of what you think of them or how they can be, reaffirm your support and be willing to make changes to how you relate to them.
For example, instead of normative statements, try factual statements, like "I know this is a difficult time and there isn't a specific way out. It is so unfair. You are already handling it with so much dignity but I'm worried about how angry you are", "You are not dark and bitter, you are a very kind and generous person. You will be a great mother.", "You are resilient. Stay strong, this will pass eventually. I am thinking and praying for you." "I will be here for you, and I want to be more educated, no matter what you decide. How can I help?". Of course, you shouldn't offer help if you don't actually mean it, but it may surprise you to know that in my two years, I have only ever had two people say that to me and neither were immediate family.
Also, don't promise success. Never say, "Just relax! It'll happen." Why? Because you do not know that.
Don't Offer Miracle Cures for your Friend's Infertility
Refrain from suggestions, don't tell your friend about your best friend's sister's cousin's boyfriend's girlfriend who couldn't have a baby until they followed a specific diet, meditation, exercise, religious routine. It's likely to meet with a bitter reaction rather than a helpful one, and unless you have yourself been infertile or are a medical practitioner, it is also unqualified. Don't be that blinkered friend who doesn't know that what worked for you or your best friend's sister's cousin's boyfriend's girlfriend, may not work for someone who really has a congenital or cellular reason why they cannot conceive or carry a child.
Don't Bring Up Infertility in Public Places Unless they do so First
Why? Infertility is often a painful topic and it is never good to cry in public. It is disconcerting to be blindsided by a friend or relatives, like my sister-in-law with two children for example, suddenly launching into an infertility discussion when I am not ready to do so or are around people I do not feel comfortable speaking truthfully in front of.
Don't Say There Are Worse Things That Could Happen or it's a Learning Experience
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? Losing an Olympics match you'd trained for years for? Nobody deserves pain or loss, and there often isn't any reason that bad things happen, or even that bad decisions are made.
Also, nobody forgets devastating and humiliating things, like a spouse's affair, once they have happened, even if they live past it. 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
Don't say cruel and insensitive things like, "Maybe God doesn't intend for you to be a mother." Or "God only gives what you can handle", "Maybe God is trying to teach you something", "Maybe this is for the best" or "you will just have to accept that this is the way it is meant to be". Even if you aren't religious, and especially if you are, try not to bring God into the picture or imply there is a supernatural bias. Even if you are not trying to suggest that some people deserve children and some not, it will sound incredibly smug (particularly if you have children). Infertility may seem like the antithesis of babies being blessings from God, but it is a medical condition, not a lifestyle choice, or a punishment. God is not in the business of divinely sterilizing men and women.
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. These reminders often make it difficult to ignore or detach from my own situation, for example, in the last week, where I faced down seven pregnancy announcements.
Over the last two years, each of my female colleagues has been pregnant, each of my female cousins and all but two of my close friends have been pregnant in turns. This means I've never had even a month where I was not in direct contact with someone else who was expecting. In a pro-family place, it was tangibly difficult to not be told about pro-mother policies, kid sleeping patterns, family plans, schooling costs or caregiving arrangements by my contemporaries, in almost every conversation, pretty much any given day.
On good days, I didn't even remember these conversations. On bad days, it was hard to keep smiling, or to not feel like an imposter, like someone looking through a glass at a scene they can't relate to and are sad to be excluded from. While I would like to think it is pure coincidence and mental suggestion, the truth is more likely that at a particular age, it forms the basic trajectory and identity of the life changes that most women, and even men, go through.
Meanwhile, it honestly still surprises me to find out anyone is pregnant, or rather, it is continually surprising to me to realize that this is how it works for most people — you decide you want to conceive and shortly after, you do. It also makes me wonder how many more reiterations of other peoples' good news I will have to hear, or how many peoples' maternities I will work through — and for an infertile woman, that number is frighteningly and unnaturally high.
Unless an infertile woman 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 first is not to complain about your pregnancy. You have every right to vent about the discomforts to anyone else in your life, but remember that this is someone who has spent years wishing it could be them, actually happy at a doctor's office, or excited about an ultrasound, or making their own announcement.
Try to refrain from putting your infertile friend in the position of relating to something that may be denied them, procuring baby-related products, or to feel envy that comes from a baby growing inside of you. Be sensitive to the ways you are taking advantage of the situation at her expense, or making your friend feel forgotten, passed over or desperate.
Steer the conversation AWAY from pregnancy and babies
It's easy, when out with friends, to gab about your kids, but when someone at the table cannot easily have them, listening to that stuff is a special brand of heartache. Try to steer the conversation to more neutral topics and remind everyone that there are other interesting topics and they are all more than the sum total of their (reproductive) parts. Remember that your infertile friends have probably experienced years of conversations like "when is it going to be your turn" and "what are you waiting for".
Don't talk about other people's pregnancies. I get it, it happens frequently, easily, to everyone but not me. I will bring it up, if I want to know. If I don't bring it up, then I don't want to know and I don't need to be updated. If you are going to tell me anyway, or tell me quietly and privately about your own pregnancy, which I really do appreciate, don't go on and on about how "I know it might be difficult for you" or "just wanted to let you know because of your sensitivity", just tell me like ripping a Band-Aid off.
Lastly, don't ask your friend, every time they don't eat sushi, drink wine, look tired or break out in pimples (these are all signs of IVF cycles too) if there is news. If they are safely pregnant, they will surely share the good news.
Most importantly, accept your infertile friend's emotions and give her the leeway that she needs to be happy for you while she cries for herself. Don't expect them to want to see your baby announcements or sonograms. If she can't bring herself to hold your new baby, give her time. Don't expect them to babysit your children, or force them to spend time with your children just to see you. As much as you would like them to love your children as an extension of you, these are your friends, not your kids.
For about a year, there were many times when I would spontaneously well up with tears when hugging a baby or a small child, just because it hurt to feel children already in existence and I was so sad about the medical intervention which wasn't working for me. During that time, I wasn't rejecting anyone or their new babies; but I definitely had to work my way through my pain to show sincere joy for them. For those people that I did visit, I knew the fact that I was willing to put aside how I was feeling, spoke volumes about how much their friendship meant to me.
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 or challenges of parenthood. The length of time you spend waiting for a baby does not factor into your appreciation of responsibility. In fact, I feel that I have had a much longer time to seriously consider the point of children and parenthood, as well as spend plenty of time with other people's children, than if I had conceived easily.
People would always tell me also to "enjoy my life", "enjoy my freedom" while we didn't have children and that "at least you'll have fun trying!". In real life, you would have done well to just stay in a positive mood, while you give yourself self-injections daily, schedule your whole life around cycles, spend hours in doctors' waiting rooms or sneaking off from appointments and manage the dread of the next discouraging news. It is a stressful and often, physically painful process. Also, most infertile women would have lived this way for years, not by choice, which can no longer be expected to feel 'enjoyable'. I would give anything to not have to live with the uncertainty or desperation that comes with not being able to conceive.
In general, I would be careful when broaching any concept of time with an infertile person, most obviously because to them, the passage of time, or repeated intervention failure and cycles, correlates that biologically, it is more difficult for them to get where they want to be. If you are suggesting that they celebrate this 'free time' (as opposed to say, celebrating that their time is coming, which is slightly more empathetic), then you can imagine why you may seem really out-of-sync with what they are going through.
Consider that if they have opted for medical help, then the routine waiting game for doctor's appointments, often weekly and every other day when on an IVF cycle, jabbing medication and blood tests, daily temperature checking or bi-weekly acupuncture, is often a more tiring and unfulfilling way, yet certainly as much an antithesis to freedom, as is spending that time in the tribulations of parenthood.
There is a physical loneliness that comes from being an infertile couple, as you are frequently surrounded by families with children and friends who have distractions or no longer have time for you. Infertile couples watch their friends give birth to two or three children, and they watch those children grow, by the year, 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. Not having a child may mean that you're never interrupted at 6am by sick puke, but it certainly doesn't mean you will never be exhausted, or silently grow older, or learn how to play the guitar, nor that life will be wonderful and better because of it. Life doesn't work that way — a resource like time does not alone determine your overall happiness or even well-being.
Having a child isn't the sudden beginning of liabilities and the end of freedom, just as not having a child when you would love one, does not by itself make you welcome 'more spare time', make your life more carefree, or remove the fear that you will never be able to have one. That's why these comments, although they may seem logical to you ("if I didn't have children, I could do so much more"), may lack perspective to someone who doesn't have a choice about their fertility. 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 some obligations doesn't even begin to compensate for the larger loss.
Also, don't say, "you can have one of my kids!" It may sound glib and humorous, perhaps as a way to lessen the discomfort of the conversation, but you know it isn't true nor funny, it actually is a deeply lousy thing to hear.
Don't Push Adoption (Yet)
Adoption is a wonderful way for infertile people to become parents. However, the couple needs to work through many issues before they will be ready to make an adoption decision, which is why you don't say "you can always adopt" as a swift rejoinder to not being able to procreate their own children.
Before they can make the decision to love a "stranger's baby," they must first grieve the loss of their own ability to conceive, especially if they have suffered negative experiences from miscarriages or IVF. The adoption process is itself 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 the adoption isn't the right decision for the parents, it is certainly not what is best for the baby. Mentioning adoption in passing is fine, but when your friend is ready to talk about adoption, she will raise the issue herself.
Adoption is also not a quick or easy process. Because of the falling birth rates and lower stigma associated with single or unmarried parenthood, more adoption is done with children who are at-risk, or have experienced severe trauma. If you are going to throw it out as a 'solution', you should know how low the statistics are — in Singapore and Scotland, less than 400 adoptions were carried out in the last year. Also, adoption is as relevant a social responsibility for people who can have children as those who can't, so don't fall into the trap of suggesting it's not needed for yourself, because you can conceive, but it should be "good enough" for your infertile friend. Being willing to take on a child is not always enough, or even the deciding factor.
Also, don't say "I had a friend who adopted and then she got pregnant right away!" That kind of advice and incentive, that you just get a child, with the sweetener that it kick-starts your womb, is quite twisted and amoral.
Let Them Know That You Care
The best thing you can do is let your infertile friends know that you care. Call them, message them, 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 helps them feel supported and less alone.
Acknowledge the problem, validate their feelings and choices and respect their wishes to talk about it as much or as little as they like. Include your friend in baby showers, family reunions, holidays and christenings — an invitation allows them to feel thought about and wanted. Don't expect them to participate in baby-related events and make it clear that you understand if they decline.
Support Their Decision to Stop Treatments
No couple can endure infertility treatments forever. They are expensive, mentally or physically painful and unhealthy. It is, however, an agonizing and equally difficult decision to stop. It involves a lot of grief and the strength to step away from their best chance of having a biological child that will represent them both. Don't minimize this decision, push them to stop earlier or encourage them to go again. People can only go as quickly as they can deal with. Make it clear that you support anything which makes them happy and don't tell them platitudes like, to "let it go" or "you never know".
It is also important to know that grief and difficult situations change people and their priorities. For example, I don't think I am the same person I was before I experienced it nor will I ever be that person again. Many women feel 'stuck' during these years, facing the same decisions as others, for example, to change jobs or go back to school, versus not being able to commit more to work; to push ahead with more treatments despite their concern about the trade-offs in health, to save for a new house, or for medical bills, or stay on because you might never need more rooms; to keep putting off plans thinking "oh, but I'll be pregnant by then", or perhaps it's a fertile period to conceive, but then it never happens — but without the progression and joy that takes the edge off the frustration. Their mental and emotional health affects their marriages and their lives.
I can thus understand why some people may bear the scars of those years of uncertainty or questioning for a very long time. If you keep waiting for your friend to "get back to their old self," you will be frustrated. Don't be afraid to speak to them about what is going on in their life, acknowledge that this may be a big part of it and to ask what you can do to help or support them.
