National Infertility Awareness Week
As those of you who’ve been reading along here will know, before I got pregnant I went through five rounds of IVF. I’m pretty much talked out re my personal experiences just now, but this week is National Infertility Awareness Week in the US, so here are some facts you probably didn’t know, and some things I learned along way that really highlight to me why we need to talk about this more. (Apologies in advance for lack of sourcing, all my notebooks and such are in piles as we get the nursery ready).
- people struggling from infertility are highly susceptible to mental health problems. For example, they are even more likely to become depressed than those experiencing chemotherapy (sadly something that is directly comparable for certain subsets of the infertile population). Why? The isolation. If you’re unlucky enough to need chemo during your life (and I watched my mum go through this some years ago), most everyone important to you will know about it and offer some level of support. Distant friends and complete strangers will come out of the woodwork to wish you well. People know you will be suffering, they expect it, and are (usually) compassionate and understanding in response. If you’re going through treatment for infertility (whatever form that may take), it’s invisible, and because most people don’t really talk about it, there is stigma and shame attached, so telling people is risky. Family and friends are not always supportive - sometimes, as I experienced, are downright insensitive - and complete strangers feel entitled to offer medical advice and tips that “worked for them” (the fertile and healthy).
- IVF is not only mentally taxing, but extremely physically taxing. I think most people, when they stop to think about it, can probably figure out that all those shots are stuffing your system full of hormones (not to mention, painful), but what about the logistics? Up at 5am for regular scans and blood work followed by a full day of work. Having to be home at a certain time to take your shots every. single. day. The way this not only leaves you at zombie levels of exhaustion, but interferes with your ability to socialise, ie, access your support network.
- in infertile heterosexual couples, approx 50% of the infertility comes from the man’s side (known as “male factor”). As women, I think we are sort of pre-programmed to believe that any failure to get pregnant is our own fault. I don’t know whether that’s down to societal conditioning or the common knowledge that women bear the brunt of the treatment regardless, probably a mixture, but it doesn’t do either half of the couple any favors. Men who equate their masculinity to their virility can really struggle to come to terms with the need for medical intervention (I know, I’ve seen it in support group) and the weight of the fallout from this fragile sense of self usually gets shouldered by the woman.
- a really, staggeringly high percentage of couples going through treatment for infertility end up separated or divorced - I don’t remember the exact figure, but it’s three times more likely to happen than in the general US population (something my doctor was kind enough to tell my husband and I just after we’d had a big fight, asshole).
- research by Ali Domar and others has consistently shown the connection between good mental health and positive outcomes in assisted reproductive therapies (ART) and yet, despite this and everything else above, counseling is rarely offered to help patients cope. Most people go through this on their own, or with whatever support network they can cobble together.
So what can you do if someone you know is struggling with infertility? In short: be kind. But here are some more specific suggestions…
- unless you are a reproductive endocrinologist, or have been through the process yourself, don’t give unsolicited advice. The chances of you being able to say anything either a) new or b) helpful are vanishingly small.
- don’t complain about your kids to them. Yes, you have a right to vent about things happening in your own life, but pick your freaking audience. Even your worst day in toddler hell will sound like heaven to them.
- don’t give platitudes. My least favorite was always “it’ll be worth it in the end.” Because, when is the end? Months from now? Years? What if it never works? Was my suffering still worth it then? Of course you want to offer comfort, but a simple “I’m sorry” or “that sucks” goes a long way.
- ask how they’re doing. The absolute worst thing is when you tell someone about your treatment and they seem to immediately forget about it. Truthfully, it probably won’t impact you all that much unless you’re very close, but believe me, this is the most important thing going on in their lives right now. Sometimes, of course, talking about it is the last thing they want to do, that’s just how it is, so try not to get upset if they brush you off or don’t respond. My favorite? The texts and messages that just said, simply, “thinking of you.”
- possibly the nicest thing any of my RL friends did for me was start following an infertility blog. It wasn’t directly comparable - they were a gay couple, with different health problems and so following a rather different treatment course - but what it gave her was an insight into the day to day vagaries of what I was going through, and what it gave me was the knowledge (very much needed at that point) that someone cared enough to go find stuff out about the thing currently dominating my life.
- accept that their treatment is likely to last a long time. I mean, they could be one of the “lucky” ones, for whom it works first time, but statistically, they are unlikely to be. Sure, the countdown to the pregnancy test can be exciting, but don’t turn it into a spectator sport. The repeated failure after all the physical and mental suffering is hard enough to deal with without your boss, your parents and your bff all jumping down your throat wanting to hear the test results RIGHT FUCKING NOW. And remember that a positive pregnancy test does not a baby make. Incidences of miscarriage are much higher for infertile couples than for the general population (I’ve had two, despite our particular issue being male factor) and so for the veteran, waiting for confirmation after confirmation before spilling the beans is not cutting you out of their celebrations, but a self-preservation instinct. It is deeply unfair to expect someone going through IVF or other ART to manage your expectations along with their own.
- be flexible. They’re probably exhausted and severely lacking in time, but that doesn’t mean they don’t want to see you. So make things easier by going to them, if possible, and give some thought to what you can do together - they won’t be able to drink, for example. Encouraging self care, like going for a pedicure together, is always a great idea, because often they’re too strung out to remember the importance of looking after themselves. (Though it’s also worth being aware that outside of Massachusetts, ART is not mandated to be covered by health insurance, and so for those going through it, money is almost certainly going to be an issue - one cycle of IVF costs approx $20,000 for the uninsured).
- don’t compare your experiences trying to conceive to theirs. It might’ve felt like forever to you, but no, taking four or seven or eleven months to get pregnant naturally does not give you the slightest insight into what it’s like to be infertile.
There is a shareable version of this post here on tumblr. Infertility affects 1 in 8 couples in America, and yet, there is still so much silence and ignorance surrounding it, to which end I invite and encourage you to re-blog and share. It’s never going to be easy, but it doesn’t have to be as hard as it was for me.
- people struggling from infertility are highly susceptible to mental health problems. For example, they are even more likely to become depressed than those experiencing chemotherapy (sadly something that is directly comparable for certain subsets of the infertile population). Why? The isolation. If you’re unlucky enough to need chemo during your life (and I watched my mum go through this some years ago), most everyone important to you will know about it and offer some level of support. Distant friends and complete strangers will come out of the woodwork to wish you well. People know you will be suffering, they expect it, and are (usually) compassionate and understanding in response. If you’re going through treatment for infertility (whatever form that may take), it’s invisible, and because most people don’t really talk about it, there is stigma and shame attached, so telling people is risky. Family and friends are not always supportive - sometimes, as I experienced, are downright insensitive - and complete strangers feel entitled to offer medical advice and tips that “worked for them” (the fertile and healthy).
- IVF is not only mentally taxing, but extremely physically taxing. I think most people, when they stop to think about it, can probably figure out that all those shots are stuffing your system full of hormones (not to mention, painful), but what about the logistics? Up at 5am for regular scans and blood work followed by a full day of work. Having to be home at a certain time to take your shots every. single. day. The way this not only leaves you at zombie levels of exhaustion, but interferes with your ability to socialise, ie, access your support network.
- in infertile heterosexual couples, approx 50% of the infertility comes from the man’s side (known as “male factor”). As women, I think we are sort of pre-programmed to believe that any failure to get pregnant is our own fault. I don’t know whether that’s down to societal conditioning or the common knowledge that women bear the brunt of the treatment regardless, probably a mixture, but it doesn’t do either half of the couple any favors. Men who equate their masculinity to their virility can really struggle to come to terms with the need for medical intervention (I know, I’ve seen it in support group) and the weight of the fallout from this fragile sense of self usually gets shouldered by the woman.
- a really, staggeringly high percentage of couples going through treatment for infertility end up separated or divorced - I don’t remember the exact figure, but it’s three times more likely to happen than in the general US population (something my doctor was kind enough to tell my husband and I just after we’d had a big fight, asshole).
- research by Ali Domar and others has consistently shown the connection between good mental health and positive outcomes in assisted reproductive therapies (ART) and yet, despite this and everything else above, counseling is rarely offered to help patients cope. Most people go through this on their own, or with whatever support network they can cobble together.
So what can you do if someone you know is struggling with infertility? In short: be kind. But here are some more specific suggestions…
- unless you are a reproductive endocrinologist, or have been through the process yourself, don’t give unsolicited advice. The chances of you being able to say anything either a) new or b) helpful are vanishingly small.
- don’t complain about your kids to them. Yes, you have a right to vent about things happening in your own life, but pick your freaking audience. Even your worst day in toddler hell will sound like heaven to them.
- don’t give platitudes. My least favorite was always “it’ll be worth it in the end.” Because, when is the end? Months from now? Years? What if it never works? Was my suffering still worth it then? Of course you want to offer comfort, but a simple “I’m sorry” or “that sucks” goes a long way.
- ask how they’re doing. The absolute worst thing is when you tell someone about your treatment and they seem to immediately forget about it. Truthfully, it probably won’t impact you all that much unless you’re very close, but believe me, this is the most important thing going on in their lives right now. Sometimes, of course, talking about it is the last thing they want to do, that’s just how it is, so try not to get upset if they brush you off or don’t respond. My favorite? The texts and messages that just said, simply, “thinking of you.”
- possibly the nicest thing any of my RL friends did for me was start following an infertility blog. It wasn’t directly comparable - they were a gay couple, with different health problems and so following a rather different treatment course - but what it gave her was an insight into the day to day vagaries of what I was going through, and what it gave me was the knowledge (very much needed at that point) that someone cared enough to go find stuff out about the thing currently dominating my life.
- accept that their treatment is likely to last a long time. I mean, they could be one of the “lucky” ones, for whom it works first time, but statistically, they are unlikely to be. Sure, the countdown to the pregnancy test can be exciting, but don’t turn it into a spectator sport. The repeated failure after all the physical and mental suffering is hard enough to deal with without your boss, your parents and your bff all jumping down your throat wanting to hear the test results RIGHT FUCKING NOW. And remember that a positive pregnancy test does not a baby make. Incidences of miscarriage are much higher for infertile couples than for the general population (I’ve had two, despite our particular issue being male factor) and so for the veteran, waiting for confirmation after confirmation before spilling the beans is not cutting you out of their celebrations, but a self-preservation instinct. It is deeply unfair to expect someone going through IVF or other ART to manage your expectations along with their own.
- be flexible. They’re probably exhausted and severely lacking in time, but that doesn’t mean they don’t want to see you. So make things easier by going to them, if possible, and give some thought to what you can do together - they won’t be able to drink, for example. Encouraging self care, like going for a pedicure together, is always a great idea, because often they’re too strung out to remember the importance of looking after themselves. (Though it’s also worth being aware that outside of Massachusetts, ART is not mandated to be covered by health insurance, and so for those going through it, money is almost certainly going to be an issue - one cycle of IVF costs approx $20,000 for the uninsured).
- don’t compare your experiences trying to conceive to theirs. It might’ve felt like forever to you, but no, taking four or seven or eleven months to get pregnant naturally does not give you the slightest insight into what it’s like to be infertile.
There is a shareable version of this post here on tumblr. Infertility affects 1 in 8 couples in America, and yet, there is still so much silence and ignorance surrounding it, to which end I invite and encourage you to re-blog and share. It’s never going to be easy, but it doesn’t have to be as hard as it was for me.