Posts Tagged ‘CIAW’

“Thoughts on CIAW” by Cindy

It’s CIAW from May 24-31. If you are not part of any infertility support groups, then you may not know that this means “Canadian Infertility Awareness Week”, but there are quite a few of us that wish we didn’t.

I have to admit to having some ambivalent feelings about CIAW. On the one hand, I think it is absolutely important that people like me get a chance to talk about the life-changing grief that comes with wanting a child and being unable to have one.

Every day, parents get to talk about the joys and tribulations of raising children, and my Facebook feed is filled with pictures of children, links to articles about parenting, and even the occasional video of a mom justifying her inability to be both a good friend and a good mom. Because people who have children cannot possibly understand the sense of loss that we feel on a daily basis, our grief is often minimized with cliches and insensitive comments, so a week to spread awareness sounds good.

Our counsellor recently shared an article from a therapeutic journal that described the grief of infertility as being similar to the grief in losing an ability (“Narratives of Infertility: Reclaiming a Fertile Lifestyle” by Hewson, Colagiuri, Craig and Yee – I had difficulty finding a full reference, sorry) . There is the initial shock of the loss, then an adjustment period that never really ends. For the rest of my life, I will encounter situations in which I will suddenly be reminded that there are certain things I will never be able to do.

I will never know what it feels like to have a life growing inside me. I will never get to watch my child grow and learn and experience new things on a daily basis. I will never be that person that child is happiest to see. I will never get to see my husband fall asleep with our baby resting on his chest. I will never get a card or macaroni art on Mother’s Day. There will be no mother/daughter picnics or dances or music lessons. When I am older, I will never get to be a grandmother. And every now and then, someone will ask me why I don’t have children, and all I will be able to say is, “we tried, and we couldn’t”, and that person won’t know what to say.

If you have children, have decided not to have children, or haven’t started trying yet, I know what you are thinking. Please don’t say it out loud. There is nothing you can say to make me feel better. Here is your personal primer – if someone tells you about their struggle with infertility, whatever you do, do not try to say something that you think will make them feel better. You do not have that power.

Here is what I suggest you say: “That sucks. Would you like some wine/chocolate?” Listen, but do not give advice. I guarantee that you do not know more about their situation than they do.

For those of us on the other side, here are some tongue-in-cheek responses to typical insensitive comments that I’ve been working on (that I will probably never actually have the courage to use):

Comment: Have you considered adoption?
Response: Adoption? What’s that? (because of course we have! Adoption is not as simple as people seem to think – please see this post for more details)
Of course.  How about you? (because why is this question only asked of people who can’t conceive?)

Comment: Want my kids?
Response: Yes.  (seriously)

Comment: You’ve just got to relax.  Stop trying.
Response: Good idea.  How should I do that exactly? (if I stop trying because it will increase my chances, then really I am still trying… I can go in circles for hours and get nowhere with this one)

Comment: My cousin tried for years, and then got pregnant after she adopted.
Response: That’s nice. Pass the wine? (really, what are we supposed to get out of these stories?)

Comment: If it’s meant to be, it will be.
Response: (I have no good suggestion for this one… the implied judgment is too brutal, so perhaps just walking away and never speaking to that person again is best)

Comment: Sometimes misfortune is a blessing in disguise.
Response: I don’t think so. Just out of curiosity, would you say that to me if I were grieving the loss of my husband? (and I guess some really insensitive people would)

Comment: Is it because you waited until you were older to start trying?
Response: Actually, it’s because the combination of my genes and my husband’s genes would be too fabulous for the mortal human realm to tolerate. Pass the wine? (and don’t take it personally. Remember that age is much less a factor than most people think)

Comment: Well, keep up the hope.  We tried for a year before we got pregnant.
Response: Congratulations.  Pass the wine? (there is no reasoning with this person. Leave them in their bliss.)

I know that people say all these things with good intentions, and I understand that it is difficult to know what to say to anyone going through intense grief. So, once again, repeat after me, “That sucks. Would you like some wine/chocolate?”

Spreading understanding of how much our society does not know what to do with people who can’t or choose not to have children seems like a great objective for CIAW, and I am happy to participate.

Many people, on the other hand, see this week as an opportunity to talk about the need for provincial health coverage of infertility treatments, and despite my own struggle with infertility, I have not yet signed a petition to have fertility treatments like IVF covered by Alberta healthcare.

I think my problem on taking a stand on this topic is that the rhetoric currently used to support the cause is faulty. For some reason, groups campaigning for coverage have chosen to focus on the financial side of funding fertility treatments, and as recent Globe and Mail articles pointed out (see “When the State Funds IVF, the Cost is Too High for Everyone”, May 11, 2014, and “Reality Check: Does it Make Sense for Taxpayers to Fund Invitro?”, May 20, 2014), the financial arguments just don’t quite make sense. Any savings made by funding IVF cycles would only offset costs created by the industry in the first place. Secondly, if IVF is funded, as it is in Quebec, the number of people requesting it will rise, so the numbers will not equate. If we are going to get really financial here, bringing more people into the world will mean lifelong healthcare costs. Pursuing a financial logic here just doesn’t make cents (I couldn’t help myself).

I am not, however, opposed to IVF being funded by provincial health care, and given the right rhetoric, I think I would become a vocal supporter.

It wasn’t until someone at an infertility support group I attended expressed her ire at the fact that her tax dollars pay for the costly medical bills of a lifelong smoker that I started to see another side to the financial argument.

We easily accept that fertility treatments are “elective”, but treatments for conditions brought on through personal lifestyle choices are not. Bob can choose not to wear a helmet while mountain-biking, and we will pay for all the surgeries to put his skull back together. We even pay to treat the people who attempt to end their own lives. We don’t question the cost of any life-saving treatments, but life-creating treatments are too expensive.

(side note: if you are reading this and thinking, “yeah, we shouldn’t pay for those things either”, you have completely missed the point)

Where is the compassionate side of this discussion? When is it OK for financial considerations to overrule the human side?

Some campaigners talk about their right to have children. I am not sure that this is or should be a right. And yet, does that matter? Lots of people get accidentally pregnant and are allowed to keep their children. People who don’t even want children are allowed to keep them. Racist people are allowed to keep their children and raise them to be racist. Those are rights.

In fact, in Canada, we women even have a right to abortion in case of unwanted pregnancy. We have the right to use medical intervention to prevent life but not to create it. Of course, abortion is way cheaper than fertility treatments, so that makes good financial sense, if not moral sense. Please do not get me wrong, I am pro-choice. For our sake and the sake of all the other wonderful people I know hoping to adopt, I wish that more women would choose adoption over abortion, but I would never take that choice away.

The social justice argument catches my attention as well. Whether we consider having a child as a right or a privilege, the current situation advantages people who can afford costly infertility treatments or adoption, and that is truly unfair. I was really fortunate in being able to try the treatments I tried, and I can afford to pursue adoption. There are many people out there who do not have these opportunities.

I also worry that keeping these options in the private sphere may lead to the commodification of children, and that is very concerning. In Canada, we are not allowed to pay surrogate mothers or egg/sperm donors for their contributions, but other countries do not have these rules, and desperate people will find ways to work around the law. How far will that go?

Of course, from a social justice perspective, there are many medical supports that are not funded that I believe should be, so it is hard for me to put IVF at the top of the list. Mental health is woefully underfunded, for example. While I was fortunate that I work for an organization with a great EAP that allowed me to get a counsellor to help me through this difficult time, many people do not have that “luxury”. Dental care and vision care are other “luxuries” that really seem more necessary than luxurious.

I can think of lots of reasons to fund IVF, but the financial side still confounds me. It is definitely a gamble (success stats very from clinic to clinic, and I find them somewhat suspicious to begin with, but most quote 15-30% depending on diagnosis), and any Catan players will know that repeated tries do not actually increase your chances. You can play a whole game without rolling a single damn 6. Yet, the prognosis of other treatments do not factor into public discussion over whether to fund them or not, so I am not sure that should be a factor here. Again, if we focus on the numbers, we lose the human side, and I am not comfortable with that.

The Infertility Awareness Association of Canada (IAAC) states that, “The Canadian Infertility Awareness Week is dedicated to raising awareness and breaking the silence about infertility. It is also about advocating for access to fertility treatments for all Canadians.” I agree wholeheartedly with the goal of raising awareness so more people suffering quietly behind closed doors will reach out for support and so more people will know how to give that support. Whether or not I come to any personal conclusions about whether or not IVF should be publicly funded, I do appreciate that the discussion is happening, and I hope to hear some new perspectives soon.

Earlier, I referred to the “life-changing” grief of infertility. I do not use that phrase lightly. Being unable to have children has caused my husband and I to question our own identities and our plans and dreams for our future. We are working on figuring out how to deal with that, and we take comfort in knowing that others have continued through this journey to find joy. Talking about our grief and giving it the attention it deserves has helped us a great deal, and so I am thankful to IAAC for providing support in opening this discussion.

And yes, thank you, I will have some wine. And chocolate.