Saturday, 7 May 2011

Guest Post: Dealing with Infertility: a How to Guide for friends and family

Many thanks to Foggy in Nelson for this contribution, on the eve of Mothers' Day.  Wanting to write this has driven FiN to set up her own eponymous blog, (the below is crossposted) which I'll be adding to the blogroll shortly. 

 
I’ve thought long and hard about whether to pen this post but after 12 hours of feeling churned up about the issue I have decided that getting it all out on paper (the laptop version) will help with the processing of my feelings, and maybe serve as an educational and useful tool for a few people out there.

 
Fertility, or lack of it, is an awkward issue. It can destroy friendships, relationships, and the self esteem of those involved because of the sheer hugeness of it all, combined with the insidious silence that is often associated with all things to do with female reproduction.

 
I have known since age 23 that I have a fertility ‘issue’, having been diagnosed with Polycystic Ovary Syndrome (PCOS) following years of irregular periods, strange weight gain, body hair and oily skin. I read up on PCOS, took the information to my GP, who ordered the necessary blood tests and internal uterus / ovary scan (fun – not) and confirmed my thoughts. I have PCOS, which means that my ovulation is out of whack. It doesn’t make pregnancy impossible, but it certainly can make it more challenging. I’m fully aware that I may have to go through the horrors of hormone treatment, medication and IVF, and that there is still no guarantee of a child at the end of it all.

 
It’s always been in the back of my mind, but it wasn’t until my marriage to S in 2009 at age 29 that the reality started to really weigh on my mind. S and I visited our GP, whose advice was to ‘get cracking’, which we promptly have done but to no avail yet.

 
One of the total arseholes about having PCOS is the irregular periods, meaning that 5-6 times a year I have ‘hope’; my period hasn’t arrived for 8 weeks and we immediately think ‘ooh, could it maybe have happened naturally’. Then comes the purchase of a pregnancy test with the heartbreaking single blue line as a result.

 
This doesn’t just affect me, it affects S deeply too. The only times I have seen him cry during our marriage is when he admits how painful our conception issues are for him. It must be doubly difficult for him; having to comfort me and the (irrational but real) guilt I face, while also feeling heartbroken himself.

 
I sometimes wonder if people are aware that we are not childless by choice, particularly given my commitment to my career (whatever my career will morph into!) and passion for feminism, choice and women’s rights. The reality is that until re-connecting with S I wasn’t desperate for children (although I did have a plan to have them one day), but once we had started dating again I have been burdened with an overwhelming desire to make a small creature that is part me, part S. I love the idea of having children who look like him, maybe have his personality, or mine, or their own! Yes, I can rationalise that it’s probably hormones talking, but that doesn’t take the pain away.

 
The reason this has all come to a head is the pain of having to endure another round of “mum’s are the best”, “being a mum has completed me” nonsense that comes up during the commercialised marketing opportunity that is Mother’s Day. Don’t get me wrong, I have no problem celebrating mothers (mine is amazing), but I DO have a problem with the sheer hype about Mother’s Day that has the opposite effect of a celebration on many people; those who have lost children, those who can’t have them, those who are trying and trying to have them, those who have lost Mother’s, those who have become estranged from their Mother’s, those who were adopted and desperate to find their birth Mother, those who had their children taken from them when it was socially unacceptable to have a baby out of wedlock.

 
I am grateful that my Mother has always seen Mother’s Day as a commercialised waste of time, and has instead encouraged us to do nice things for her on a regular basis. She would rather us attend her PhD graduation, make her regular cups of teas and have long phone chats, instead of making a big fuss of her on a random day that has been designed to generate $$ for companies.

 
I make the comparison with Valentine’s Day. I’d rather S made me cups of coffee when I’m working on an essay, gets up in the morning with me when I have to get to the airport early and buys me flowers / chocolate / wine / ice cream occasionally. It would suck to be in a relationship when it was only celebrated once a year. I would likewise encourage those who go overboard on Valentine’s Day to also think about the effect of their celebrations on others. Since struggling with our infertility issues I have become acutely aware that shoving my happy relationship in other people’s faces could actually be really hurtful for those who are going through a breakup, separated from a loved one, bereaved, or single and lonely.

 
This isn’t to say we shouldn’t celebrate the happiness in our lives. But we should also do so sensitively and also keep a look out for our friends and families who have tough burdens to bear and think about their needs.

 
One further point before I leave you with some ‘do’s and don’ts’ for supporting a friend or family member who has infertility issues. Being a mum is not “the best”. People who say that are unintentionally ostracising and demeaning the work and lives of those who are not mothers. Just because we’re not mums doesn’t mean we can’t be “the best”. It doesn’t make us less loving, less caring, less hard working, less smart, less connected to people, or less valuable. We do other things that matter: we advocate for people, we work as cleaners, doctors, teachers, bus drivers and politicians. I am no less a fully-fledged adult woman because I haven’t popped out a sprog yet.

 
Do:
  • Involve us in the lives of your children. Just because we don’t have them doesn’t mean we don’t like yours. Invite us to birthday parties, baptisms, school assemblies etc. When you leave us out but invite your friends who do have children you only ostracise us further.
  • Do allow us to say ‘no’ though if it is a bit too hard.
  • Ask us about our work and actually put some genuine interest into it.
  • Organise a girls’ night, get a babysitter, and keep children out of the conversation.
  • Remember that we childless ones can have sleepless nights, stress, and sickness too.

 
Don’t:
  • Pity us. Treat us as human beings with full lives, because we don’t need children to have a full and interesting life.
  • Expect us to get super excited when you get pregnant / have a child.
  • Give advice on how to get pregnant, or promise that we will get pregnant one day. How could you possibly promise that?
  • Tell me a story about someone that I’ve never met with PCOS who got pregnant after trying for years. How could that possibly help me?
  • Forget about your childless friends after you’ve had a baby. We’re still here!
  • Stick endless posts up on Facebook about your children’s nappies, teeth, sleeping routines etc. No offence, but no one really cares.*

 

 

 
* Ok, so that may be a little harsh, I don't mind hearing about children occasionally but when it's all I ever see it's quite a put-off and makes me assume that you have nothing else to talk about. For me, seeing your posts about kids all day is the other side to you putting up with constant political posts from me.

27 comments:

Cactus Kate said...

Sorry to hear this is an issue in your life. I do often think how awful it would be if you wanted children and could not have them. I think about this when people are taking the piss out of my lack of re-production, I do stop and wonder how crap it would be if you weren't that way by choice but through inability to procreate.

In short anyone who hassles a women for their lack of children is an arsehole. I know for every woman like me there may be 10 or 20 putting up with this sort of carry-on living with the cut up feeling that they cannot breed.

In short if a woman does not have a child, shut the hell up about it, no smart comments or jibes. That would assist those like yourself far more than it would me, who unlike you can just laugh it off.

Foggy in Nelson said...

Cactus, me thinks you might enjoy this:

http://jezebel.com/5680665/what-facebook-feed-looks-like-when-all-your-friends-have-babies

Cactus Kate said...

lol

Anonymous said...

Re: PCOS, I have this too and a few years ago was referred to a public gyno when I was ready to get conceiving, a horrible experience for a range of reasons I won't go into. After a futile few years my GP said, look, why don't you try a private gyno which I did and it was a Good Experience. I wasn't eligible for publicly funded Clomiphene (which is a drug that stimulates ovulation) because I was outside the BMI range (which is quite low, all the medical professionals I have talked to about this acknowledge that) so I paid for that as well as my consultations and conceived after the first round, a process which took just a couple of months and cost maybe $700 all up for me including the drugs and consultations.

Anyway, I just wanted to let those out there who might be thinking of going through this kind of process that it can be awful (I experienced that, being told to go away and lose weight and not given any other help, just ending up in this endless treadmill of useless consultations with a D&C thrown in for good measure) but there are also doctors who will treat you like a real person. I didn't have any nasty side effects from the Clomiphene, maybe just a dodgy tummy but nothing compared to actually being pregnant...

Anonymous said...

BTW I chose my private gynaecologist because my GP told me that she had another patient who was a lesbian who was overweight and this patient had tried a few private gynos, some of whom were horrible but had eventually found someone who treated her respectfully and kindly. So recommendations are important! Looking back I would have skipped the whole public process, it was a waste of time and I have rarely felt so dehumanised.

Anonymous said...

Agree, Cactus, that those of us childfree by choice can/should/do laugh it off. And those CF not by Choice face a seriously tough road in this nuclear-family focused society. Still, the endless bingos can get pretty tiresome, along with the messages FIN mentions in her post about mothers being The Best, that being a mother being The Most Important Job In The World = you non-mothers are not quite up to scratch and Will Never Know What It's Like To etc. etc. And when asked "do you have children" (amazing how frequently!!), the silence that drops when the answer is "no" and the asker clearly wants to know WHY because having kids is the default, so What's Wrong With You? etc. etc. But hey, all minor stuff, I know, since I'm blissed that I knew what I wanted (no kids) from a young age. Signed: Treeclimber

Foggy in Nelson said...

Thanks Anon (the first), that was helpful. It really sucks that discussing infertility, miscarriages and everything that goes with choosing to have children or not is still such a taboo subject and I have essentially had to resort to a private blog to do this after a new mother hijacked my facebook post.

I have heard about Clomiphene but currently have a BMI that is too high for a referral - am also supposed to be taking Metformin but the side effects are not useful for my job!!

Anonymous said...

Another don't (from my years of experience)
Don't moan about, abuse, or publicly criticise your children. You are so lucky to have them, please appreciate them and if their behaviour annoys or inconveniences you at times, please find some other mothers to share this with in private.

stef said...

I'm sorry that you are going through this. I don't know how you are feeling, but I'm sure it can be just awful at times. A

lso yes to people putting up facebook photos of every damn scan and belly photos, especially if they end up being the profile pic.

I usually just remove the offenders from my newsfeed when the baby crack takes over...

Anonymous said...

Hey Foggy, my private gyno did an assessment of risk factors associated with being pregnant with a high BMI and mostly they aren't there. If you are at risk of/have diabetes that is something that will be monitored closely. As my GP said, a lot of larger women safely have babies every day so you have to learn to filter out a whole lot of the shite that medical professionals give you if you are bigger. When talking to my gynaecologist we had a discussion about how in an ideal world my BMI would be lower (because it's all about stats in the medical business) but because that won't happen immediately then there are increased risk factors associated with age so her advice was that if I wanted to conceive was to give Clomiphene a go.

One horrible experience I had was when I was having minor surgery to check out my uterus the anaesthetist, who I had never met before, said to me during the consultation, "you really need to lose some weight". More than anything I was confused; I was having surgery that morning, they were the ones who had recommended it, was she saying I needed to go away and lost weight before having it? When I asked what she meant she just told me I was too big. Awesome, thanks for the feedback. I talked to my GP about it afterwards who just rolled her eyes at the unhelpfulness.

Anyway, I took Metformin for several years too, as well as Progesterone, and nothing happened. My ovaries were really PCOS, during a consultation one radiologist said it was a shame she didn't have a student to show because they were such prime examples. However, after one round of Clomiphene (five days of pills) I ovulated. I was scanned internally to make sure it was just one egg (to avoid a multiple pregnancy) and I was pregnant the next week. If I had stayed in the public system I would not have been able to be prescribed Clomiphene and I am sure I would still be where I was with my body just not quite able to do it itself.

I know Clomiphene isn't for everyone but I wish I had known what I know now a few years back. I knew that I was the problem and that my partner had a high sperm count and before going to see the private gyno I had been thinking that if it didn't work I would have to break up with him because I knew he wanted kids and I was what was holding him back. I feel really angry when I think about how unhelpful the public gynaecologists I saw were and give thanks for my lovely GP.

MH

Alison said...

I'm sorry you're dealing with this FiN, and I hope you and S will get to be parents since that's what you want. PCOS is an arsehole, and I know so many women with it.

The rhetoric about motherhood being the best job in the world harms so many women. It makes those who can't have or don't have children invisible, or inferiorand it silences all the women who are struggling with motherhood for any of the myriad reasons that they might. It's a pretty messed up way of "celebrating".

Foggy in Nelson said...

Thanks everyone. MH - you sound like a wealth of useful information, it would be wonderful to catch up about it all. Does Julie know how I could get in touch with you? (if not, she knows you could get in touch with me!)

Intersex said...

For some of us, there no options at all, as we have no functioning reproductive system.
Count your blessings that you have at least a chance of becoming a mother.

Foggy in Nelson said...

Intersex: I couldn't begin to understand how that would feel, and I'm really sorry to hear that.

I guess though, and this may sound weird (maybe others in my situation can let me know if they've experienced this too?) but in some ways knowing there is a chance makes it harder. Because you have that hope, everytime it doesn't realise itself you reexperience the trauma. S and I have often discussed how we would rather know that it's a 'no' so at least we can deal with it and look at other options (adopting, fostering etc).

Intersex said...

Sorry, that doesn't really make any sense to me. That's like saying that it's harder having the hope of walking than it is being wheelchair bound for life with no hope.
I would do anything to have hope.

Julie said...

Sounds like they are both awful situations to me, and I don't think it's necessary to declare one worse than the other. Uncertainty & hope versus certainty & no hope. I feel very very lucky to have had both certainty & hope so far.

Azlemed said...

on eof the people closest to me has pcos, they started trying for a baby around the same time as we did for #3, it eventaully pulled their marriage apart, he blamed her, and then didnt want to accept that his sperm count played a pretty big factor in it too....

Mothers day suxes for so many women, its nice to honour our mums, but what about step mums/ dads girlfriends, women who have lost babies etc.. they get left out in all the commercialism

I try not to post all the time on fb about my kids, and try to have me or something about me as my profile pic, just because I am a mum to 4 doesnt mean I want that to be the only thing that defines me.

Anonymous said...

Intersex, the particular misery of being in limbo is hard to explain. You feel healthy, you allegedly have the bits needed, you're doing what they say you need to do...and yet nothing ever happens.

Foggy in Nelson said...

Hi Intersex, well that's the way that I feel and as much as I try to change it I can't. Being devestated every time I have a period is something I have to live with, plus many other reminders on a daily basis.

I haven't suggested I understand how it feels for you or that your situation is worse / better, so please don't do that to me. Thanks.

Intersex said...

I think it's safe to say that I'd trade places with you, but you wouldn't do the same. Fair?

Wibble said...

I think it's safe to say that I'd trade places with you, but you wouldn't do the same. Fair?

Why not? Surely the most important thing about a post like this is to start an argumnet over who has it worse.

Intersex said...

Isn't that what this whole post is about? How hard it is to be semi-fertile compared to those who are fully fertile?
How disingenuous.

anthea said...

@Intersex - I find that a really problematic analogy. There are plenty of wheelchair users who find having a predictable (well, as much as it ever is) situation and finding the best way to make it work for them to be easier.

I understand you find having no chance of fertility harder than a small chance, but please don't co-opt other people's situations to make that point.

Foggy in Nelson said...

Actually Intersex it wasn't and it seems you've missed the point of my post and maybe not read the others on my blog? Mother's Day can suck not just for people like me, but for people like yourself, those who have lost children, or who have lost their mothers, or for a myriad of other reasons. I was hoping to be able to open up some of the discussions about fertility and also about choice, particularly amongst a feminist readership who I would hope are more likely to be supportive of the different choices and different trials that we face as women.

(gaaah cat just landed on my laptop and deleted half my post)

In terms of would I trade? Well, even though that's a hypothetical/unrealistic scenario, yeah I might. As time goes on I think more and more of me would.

Maybe if you knew me better you would understand. I'm a planner, my husband is a planner, we're trying to plan how our different careers will fit / we're will live, etc etc. I'm not a particularly 'go with the flow' kind of person. I'm the kind of person who would prefer to know rather than not know. I know that isn't how the world works but that is how my personality is wired, and that was the point I was trying to make.

Deep said...

Well, even though that's a hypothetical/unrealistic scenario, yeah I might. As time goes on I think more and more of me would.

Well there are surgeries available that could give you that certainty.

Julie said...

I'm unclear what the point is of a competition over this. Can I suggest we move on and discuss other issues? Kthxbai.

Anonymous said...

Amazed and disgusted by the responses to Intersex.

Intersex, there are lots of friendly places on the internet for people dealing with infertility; I hope you find a safe place. This certainly isn't one.

I think what fertile women are unable to understand that it's very difficult for someone medically infertile to be expected to sympathise with someone who's having trouble getting pregnant (as is the OP's situation). You aren't in the same boat and no, you don't face the same issues or the same trauma during mother's day. It's not even close.

By the way, in the interests of clarifying something for your readers: IVF is not a big deal. Emotionally it's a terrible ride, but - if you're as lucky as the OP when it comes to fertility - you can reassure yourself that you can do it many times. Needles and pills are an annoyance, sure, but in New Zealand the success rate for someone your age is 45%. For three IVF turns, the success rate is 80%.

Always nice to have choices, isn't it?

-IVFBunny