ghostpipe

Navigating Infertility

Being infertile is sometimes like living in a sub-world or alternate reality. I worry about that feeling not going away with time, that the rest of my life will be this weird, second class citizen experience. I’m 2 months from 38, and coming to terms with the fact that 3 years, countless doctors, 4 IUIs, surgery for endometriosis, a million supplements, and acupuncture haven’t done a thing. It’s time to start accepting the fact that it’s likely I won’t have a child. It’s such an isolated place to be in our society, especially Vermont society. So I wrote down a few things that exemplify my infertility experience in an attempt to both dig through them internally and to let other people know what it’s like.

1. My friends worrying about telling me they’re pregnant.

I was talking to a friend and she mentioned (paraphrasing here) that she worries that her infertile friends might not be able to relate to her, or that the relationship might be strained because she has a child and her infertile friends don’t. I practically fell over myself trying to explain that when nice, intelligent, respectful-to-the-world-and-their-fellow-humans people have babies or announce pregnancy, it genuinely makes me happy. I love when my friends get pregnant. It means I get to hang out with babies, and especially shop for babies (usually at Emily’s shop), which is basically my favorite thing ever. Have you seen my friend Kate’s baby? She’s the cutest baby of all time. Keep having loads of babies, friends, but please don’t stop inviting me to hang out because I can’t have babies.

2. The assumption that I clearly can’t do a job relating to kids / moms, because I don’t have children.

There is such a culture of parenthood where I work – and not just parenthood, because I think dads get the fuzzy end of the lollipop too – but a culture of motherhood. At work and in the wild, getting to 38 without having children is incredibly unusual here. Talk usually turns to children, it’s the common ground that people use to relate to each other. My team writes a lot of content targeted at parents/caregivers, I often get the following from fellow co-workers: “Did anyone who’s actually a mom write it?”

I recently read a blog post lampooning Restoration Hardware for not understanding children. “I also was struck by how painfully obvious it was that whomever was in charge of styling these rooms for the website and catalog clearly doesn’t have kids of his or her own” the blogger wrote. First of all, blogger lady, what’s painfully obvious is that Restoration Hardware has zero interest in relating to your peasant life or your peasant children. But more importantly, the stylist did his/her job perfectly, which is to translate the brand story into images. If the RH brand story was “make this room look like average kids live in it” then that’s how it would have been styled.

The idea that someone without children is incapable of knowing what the average child’s lived in room looks like is ludicrous. If one’s job is to make a room look lived in by children, or to write articles of interest to mothers, or to design toys for children, or anything relating to parents and children, one puts in the effort to make sure the job is done correctly. Because that’s what you do if you want to do your job well. Research, surveys, observation, personal experience, asking friends & family, reading blogs, stalking your parent friends on twitter, etc – there are a million ways to approach a task like this, and will probably deliver a more universally appealing end result than if one parent drew only on personal experience alone.

We’ve all been children, and childless people do not live in a secret world without children. In the course of my (nearly) 38 years, I’ve changed diapers, rocked babies to sleep, read bedtime stories (over and over and over), gone back-to-school shopping, cooked special meals for picky eaters, cleaned up after toy-box-explosions, made up one million road trip games, raked the biggest leaf pile for jumping in, picked out the coolest school supplies, drawn endless pictures on demand, held bellies up as they learned to swim, navigated grocery shopping with grabby hands, and in general have made my family a priority in my life. Our experiences are vast and varied, and family units take many, many shapes. But even if I wasn’t often around children, I’d still be able to do my job, because I’m not an idiot.

3. Being told I’m being crazy.

I can’t tell you the number of times I’ve heard “Wow, you seem like you’re making yourself really crazy over this.” For some reason there’s a real lack of understanding that this is a medical condition, a disease, with the associated traumas and stress that a disease brings. Research shows that the stress levels of infertility are equal to having a terminal illness. Taking the needed steps to try to medically address infertility (and in my case, the endometriosis that caused it) is not “making yourself crazy.” Stress takes a toll, the treatments jack your hormones, it’s a medical condition – a failure of a biological mechanism –  that’s not covered by insurance. So while I may seem upset by my lot in life, in pain from the endometriosis, addled by the hormone treatments, or worn down by chasing doctors; I’m not MAKING myself anything. I’m being proactive about a medical condition and could use some support.

4. Really shitty people being pregnant.

Ok, this one doesn’t happen that often, but sometimes one of the worst people I know will be like “Whee, knocked up!” and I’ll be like “Didn’t I block you ages ago? FML.”  I do get pretty dang grumpy about the pregnant smokers / Red Bull drinkers wandering the streets of Vermont. But it works in reverse, too – sometimes people I follow online but aren’t invested in announce a pregnancy and I get really happy for them because they seem really GOOD. I’m a simple person, as it turns out.

5. Going to the lady doctor.

As I was writing all this (and debating about posting it at all), Sharon posted a similar experience. Shared experiences, they make blogging seem worth it! But, yes. Going to the OB/Gyn is such a terrifying thing now that my blood pressure was through the roof on my last visit, to the point where they called the next week to make sure I got it checked again and was ok. Swarms of super young, hugely pregnant women, with babies in tow already. Doctors who either don’t think anything is wrong, or who think I should have a $20K procedure (hint: I don’t have $20K!) with a 12% success rate (age + endo puts me in the low-success category) immediately, or doctors who just don’t know -anything- and waste my time and money. Vermont is not the place to be infertile, the average age people start having kids is very young. Starting to try a month after turning 35 (when my husband  had just turned a whopping 28, and we’d been married all of 3 months) is sheer madness here – but in San Francisco, 35 was considered just fine. In addition to the land-mine waiting room, I have to call and fight with the billing department because having INFERTILE stamped on my chart means that regular checkups often don’t get covered.

I’ve noticed some posts lately about getting the run around at a doctors office. I’m still having to ask my friends who have access to better health care for supplement lists or recommendations from their doctors. I had to demand a routine progesterone test during my last IUI. I know these are not unique experiences. Part of me wants to go to medical school to start researching / getting some dang answers for all of us. Deeply unlikely, so here are some good resources: hormone levels & fertility bloodwork charts, fertility neighborhood, resolve.org

6. Not having a baby.

It still feels like some weird nightmare. Tiny steps to acceptance.

44 Comments

  1. I’m sure this was hard for you to write and post, but thank you for doing it. I have no idea where I’ll end up whenever we start trying for kids, but I know everything you’ve shared has helped me try to be a more empathetic and aware person for the people in my life. And I definitely don’t think you’re crazy.

    1. Thank you. It’s not even about “being crazy” it’s that I’ve had people act like the emotional trauma, the medical tests, the fertility treatments, etc are something I’m doing to myself that’s making my life hard. Would you say that to someone with a serious illness who was trying to get better? Why is this acceptable!?

  2. I am glad that you wrote and posted this. I am particularly struck with the stress levels of infertility being similar to terminal illness. Having watched several friends go through it, I am not surprised. I wish that it could be different for you. I want you to know that I am thinking of you often and please, please let me know if there is anything I can do.

  3. Item #2 is mind boggling. People research and serve demographics that aren’t themselves ALL THE DAMN TIME. Like say, the entire ad industry for example? Do you think it’s perhaps your company/Vermont? Or a larger assumption than that? I feel like that wouldn’t fly in a larger city. To overlook all of the input from staff who aren’t 100% exactly the targeted demographic is to leave money on the table in a big way.

    Also, #5 REALLY SUCKS. It sounds like a difficult enough path to travel without having to monitor your own medical providers to do their damn job.

    Thanks for having the guts to write this. I knew you were going through various issues related to infertility, but to see them all in one place like this, HOO BOY, I’m glad you have an awesome husband to help you navigate this.
    <3

    1. I know! Coming from an agency background especially, it’s like – what? That’s how advertising WORKS. Which is probably why it makes me so disgruntled. It definitely could be Vermont, but then you do see comments like the blog I referenced.

      #5 seems pretty universal. Doctors just don’t know enough about the causes of infertility yet. It’s maddening to have to be the generational guinea pigs.

  4. It’s interesting how much of this I can relate to even though I’ve chosen to not have children. I worry a lot that that choice could be seen as being hurtful to friends (like you) who would like very much to have a child but have not as of yet been able to. I want to be a better friend to the people I care about who are dealing with infertility, and seeing all of these points laid out helps me to see that we’re actually not coming from totally different POVs. Thank you.

    By the way, I had the exact same reaction as you to #2 when I saw someone link to that post. I felt insulted as a commercial designer and as a woman (and as an aunt, and as a human…etc.). Sigh.

    Love. x

    1. Yes! I do think some of this is true for childfree-by-choice people. I love that I have friends who are choosing not to have children (not a lot, but some!) because it really helps me create a healthy and awesome model for a life without kids, even though that wasn’t the one I imagined for myself and will need to restructure my goals. Plus, we’ll be able to take trips to Paris together when we’re old ladies.

  5. Just wanted to leave some <3 here. I didn't mention it in my post, but my blood pressure was through the roof also that day. I promised them it wasn't an actual problem…

  6. I have seen women I love go through this. It is a tragedy, in its own way, and you are by no means making yourself crazy. You have a right to your grief and any other feelings you are sorting out.

    Vermont does seem to be compounding the problem, at least rural Vermont. As you know, here in Silicon Valley, you’d be in the company of many sharing your circumstances, and going to a doctor who understands.

    I can only wish you time, and the love of your dear ones, to help you through.

    xoxox

    1. The irony of course being that we moved away from SF to have a family – not knowing this would happen! Moving back doesn’t seem like an option, but we are going to figure out next steps to get us somewhere more supportive.

      1. Cambridge Cambridge Cambridge! We will smother you with love, support, and a strong community of amazing specialists and all shapes and sizes of family.

          1. All these reasons! Especially that last one! (Seriously though, I think about you guys a lot, and in my heart of hearts I know it will happen for you. That sounds both presumptuous and hippie-dippy, but…I know.)

          2. Hello Tamera,
            I was wondering, why not try IV?
            … until I got to the line where you write you don’t have the 20K.
            Es ist verhext!
            Please excuse me for asking straightforward: is there no way for you to get your hands on that money? Move to a smaller home? A loan?
            I makes me very sad to see how a number of bills says which way your life is going to continue.

            If asking about the 20K is not ok, please delete my comment.

            warm regards,
            Paula

            1. Hi Paula –

              We live in a very cheap house now.

              We are looking into a medical loan and are taking the next 6 months to decide if we want to gamble that kind of money on treatment with a 15% success rate.

              Life for most people is all about bills saying which way your life continues, by the way. School, children, the ability to have transportation to a job, being able to invest in your future – it’s all privilege, isn’t it?

  7. Every time I go to the lady doc and the fertility doc, my blood pressure skyrockets. It’s so stressful and a completely loaded situation. 9 times out of 10 they will code the visit incorrectly and I’m already aware during the appointment that I’ll be fighting with insurance to get my visit covered in a few weeks when the bills roll in. AND having to call the provider to have them resubmit without FERTILITY stamped on a visit that I’d need whether we were trying to have a baby or not. Of course our blood pressure is up. Plus, all the hormones affect it too.

    Anyway… you know I relate to all of this too. I’m so glad you’re my friend–obviously not just because of this, but it does help to feel a little less lonely when everything gets so overwhelming. Love you, lady! I’ll go to Paris with you with or without babies. xo

    1. They’re supposed to cover tests but not treatment, but they WILL NOT cover tests. I have called over and over and over again and the hospital REFUSES to change their coding. I have no idea what to do. Tempted to check if I have any legal recourse.

  8. Tamera – What a great post, thanks for taking the time and heart to write it. Its a nicely written perspective to be read by fertile ladies, and infertile alike. Its such a difficult subject in social situations, wether that social situation be family, friends, or co-workers.

    While not technically infertile – I have been diagnosed with “recurrent pregnancy loss” – which ends up being all the same in the end. I too, HATE, going to the lady doctor now. I dislike the waiting room, and I’m terrified of what news I will find out THIS time….as its always something else to add to my list of medical conditions…sigh

    Infertility is an odd combination of numbness and sadness. After my most recent loss at 37, trying to figure a way forward, I found it best to walk away from “trying”. (That was best for me, not suggesting that should be your solution). The funny thing is, after walking away, I’ve realized that I had put my life on hold for many years, consumed with trying to have a baby, and all that goes with it. Plans changed, plans delayed, no spontaneity, etc. …the best way for me to explain is that life became watered down. I now feel like I am doing better (in my heart and in my head) than I have in many years. I am at peace with the fact that I may never have a baby. I don’t like it, but I am at peace with it for now.

    My glorious hubby and I are looking forward to traveling, backpacking, camping…reconnecting in a way that infertility disrupts. Next year sometime I may apply for fostering a young teen or two.

    I know this is getting long, but I’ll wrap it with this…I had watched a video introducing foster teens looking for families. One gal really gave me new perspective on fostering/adopting older kids (I always figured IF I adopted it could ONLY be a baby)….she explained she had been in the foster system for many years, and at 17, a senior in high school, she was “highly motivated” to find her forever family. This child, on the verge of adult-hood, wanted nothing more than to move forward with a family at her side. It struck me, that we could be that family for a child like this. Anyway, not suggesting this should be your direction, just that for me, it was my Ah-Ha moment , and I think that jumpstarted my healing/coping, and allowed me to see myself in a different light. I am not just the 37 year old lady that can’t have babies, I can be so much more :)

    Be well! ~Erin

  9. I relate to so many of these.

    #3. People would poo-poo me all the time. I actually had someone tell me *I* was making things harder than they actually needed to be, and had more than a few insinuate that I was merely “being impatient” (because people choose IVF when they are impatient?!?). All from well meaning, loving people.

    #5. There is such an lack of education about reproductive issues . If I were to recount all the bad information I got – from doctors! – it would take all morning. I can’t help but feel like at least part of the reason is because it’s a “lady” issue, even though – fact – 30% of fertility issues originate with the man. The stigma of infertility is always left at the woman’s door. And don’t even get me started on the lack of health coverage in the US. It’s hard not to assume that us ladies are being singled out when Viagra is covered by most insurances.

    and, if I may, adding #7: Being told that there is always adoption. As if adoption is as simple as running off to Target to pick out a baby. Someone asked me once why I found that so offensive, and the best I could explain was, it’s telling someone that you don’t recognize their experience as worthy of grief.

    And as always, I am rooting for you and Sean, whichever way life leads you.

  10. Infertility sucks! We have gone through several rounds of treatment and after our last treatment and negative pregnancy test we choice another route and now have three children through adoption. As I look back on the whole process I have realized that we were meant to take a different path and our family was created in a different way than I expected. Hope you find your path along the journey.

  11. I am always so appreciative of these posts and our (brief) talks. It is so hard to talk about, no matter which side of #1 you are on. (you know #2-5 can suck it).

    But #1 is real to me. I’ve wasted too many moments trying to awkwardly negotiate the space between a friend (and I’ve had so many, too many!) who are at various stages of infertility.

    What I should have said in the past, and try to say more openly now is: it fucking sucks, it sucks for both of us, because when you adore someone (even if afar from over a computer) you want to share in their joy, but you also share in their loneliness and you want, even if only a little little bit, to make it less lonely. I hate infertility for making us mute and awkward at the moments we need eachother most. The last time I saw you, in such a gracious way, you said you really are happy for friends. Just hearing that made me get over fearing I would say the wrong thing.

    And you know, I’ll always be a holdout, I’ve had too many friends try for just as long with as many interventions not to reserve real science-based hope that it’s going to happen. It’s going to happen.

  12. I am so humbled by your honesty and courage in approaching this topic. Your struggle with infertility has made me more sensitive to the way I spoke, and speak, about my own pregnancy and now about my 8-week-old daughter. You have made me more sensitive and appreciative and for that I am grateful. So thank you for that.

    I am rooting for you guys as you navigate these waters. <3

  13. Number two. NUMBER TWO! My industry would crumble if one had to have children to know and understand children. And that Restoration Hardware thing? Rooms like that exist and have children living in them. I know because I have cleaned them at work and helped parents to find hidden storage solutions for all of the unsightly kid things 😉

    Seriously though, I find that the longer I am a mom, the more narrow my views become re kid things because the focus is on MY kid, HER quirks, our very specific needs as a family, etc. It’s such a physically and emotionally all-consuming thing that my day-to-day life rarely leaves room for me to leave my tunnel vision. I think that becomes true of a lot of moms and it’s reflected in what they put out. Because of that, I actively seek out kid-related blogs, articles, etc written by people other than moms.

  14. It fills me with unholy rage to read that even non-baby routine female care is becoming a headache for you because of “infertile” being associated with your file. What in the what. Rage. :( seriously, what the hell, healthcare system?

  15. I really appreciate these posts so I can learn more about what my friends are going through, you included. I want to be more supportive. I can only imagine how infuriating it would be to go through this process, deal with these doctors and bureaucracy, and then be told you were making yourself crazy.

  16. When we left you guys on Thursday night, Jason said, “It’s just not fair.” He meant infertility. I agree with him. Wishing you and Sean every good thing in the world.

  17. Thank you so much for sharing these hard feelings.

    Numbers 2 and 3 infuriate me the most. Ugh!

    You would, hopefully will, be the most amazing parent.

  18. At least you are married. I’m the 37 year old spinster who wasn’t able to catch a guy. Urgh…

    Have you considered adoption? Sorry if that question’s too personal – I’d totally understand if you don’t want to answer.

    All the best for you!

  19. Oops, sorry! I don’t know how I did that! I wanted to say: I have nothing insightful to say in response to this post, but thank you for writing it. It was very touching and important.

  20. when i was a little girl i was endlessly fascinated with a couple that were friends with my parents, you see they did not have children. i always wondered to myself why, what was wrong with them, they seemed so different………..
    as i write this i am a 57 year old woman without children, same reasons as you, same frustrations but with a husband who refused to adopt, a dead end.
    i chose to redevelop myself and start a career that spoke to all my passions, today it is my 25 year old child. as the years went on my yearnings waned, and as much as i wanted to be a part of many mother’s conversations, i just did not fit in.
    but do know that life has it’s plans, all of our roads are different, and IF your road resembles mine make marvelous plans for yourself.

  21. Thank you so much for writing this, Tamera. Like Jen said above, it does make things a little less lonely knowing there are other people who get it. And not just other people but like minded people! Sometimes I feel different again even within some infertility forums and had actually been thinking about writing you lately just to be able to touch base with someone else on the same page. It seems like there is no one in my ‘real life’ in this position, just lots of really fertile myrtles. Of course, in reality I would much rather that we didn’t have this in common and that you and I both were just having lots of fat babies.

    I reeeeallly related to Number 3. While I keep my infertility pretty private even among my friends (although I’m sure they all suspect as much) I can’t count the amount of times I’ve been told just to relax and let it happen. Nope, I still don’t ovulate properly. I know that stress can play a part in various health issues, but I can’t un-know what I now know about how my body works and taking steps to try and remedy that isn’t crazy, it’s common sense.

    And of course, number 6. It’s so strange as a person who is stubborn and determined, to not be able to just work really hard or so whatever I need to to do to fix this. I can’t quite wrap my head around it.

    Thank you again for putting this out there, it is really brave. Sending you and Sean so much love from the other side of the world xx

    P.s. Please let me come to Paris on a barren ladies trip, especially if we can dress like Golden Girls.

  22. this was so raw, honest and insightful to read. it’s something i think about a bit lately. i’m in a parallel yet not situation — you and i are the same age, and my partner is also younger than me. i actually never considered having children, ever, until i met him a few years ago and realized, wow, it’d be amazing to have a family with this person. but i worry that i’ve missed the window b/c of my age, and then i worry we should be in more of a rush, but then i worry it’s not something we should rush into if we’re not at a place in our lives to start a family…and…and…suddenly it is all very overwhelming.

    but that is just me. i wish nothing but good things for you and your husband!
    xo k.

  23. Just catching up on this and just… YES to all of it. I’m not 3 years in yet… we’re just starting the process after years of trying (as you know) but I already feel so many of these things. The part where people really just think we’re clueless about kids in general drives me BONKERS. Look, people, I have been changing diapers since I was old enough to walk practically – I’m not an idiot.

    On a positive note – I am so thankful we’re in Chicago where people tend to have babies older, and where we (apparently) have a wonderful fertility center. Maybe you should just move here and then we can be real life friends, yes? Also, the food is fabulous here. Although I would miss all your quaint instagram posts about new england life… sooo. hmm. decisions, decisions… :) xoxo :)

  24. Oh – and the amount of times I’ve been told to “just relax & stop stressing and it will happen” makes me want to punch people in their kidneys. Also “Just put in paper work for adoption and before you know it you’ll be pregnant! It happened to my friends!” !@#$%^&*(^%#@#

  25. I’m so sorry you are having to go through this. My husband and I have not started trying yet, but since I want to be completely prepared I’ve already considered adoption. I think I love the idea, but my husband is not sure. Have you considered it? From what I hear it’s an emotional process and you have been through a lot already, but it’s worth thinking about maybe….?
    xo

  26. I am part of a fantastic online community called Gateway Women. The website is here: (http://gateway-women.com/)

    The online community has been a godsend for me, personally. The creator Jody Day has done something very special creating a space for non-mothers.

    All the best to you. x

  27. Tamera, No you are not crazy, know you are not alone.
    I too have endometriosis, ovarian cysts and fertility problems, apparently my blood work looks fine, I chart, use a ovulation microscope ect. and my last ultrasound to look at my cysts was fine . I can’t tell you how many times I’ve heard a doctor say, anytime now it should happen and it will help your endometriosis when it does, well it hasn’t and and I know things aren’t fine.
    Two things that really bother me are when people ask my husband and I if we want/ or will have kids. Oye, such a loaded answer, where to start. My husband wants to tell everyone that we’re trying but I don’t want to see someone 6 months from now only to have them ask if I’m pregnant yet. The other annoyance is co-workers who assume I jsut don’t like kids because I don’t have one.
    Whatever you decide to do next know that there are other people out there, who have taken some sort of comfort from reading your posts and knowing that we too are not alone.

Leave a Reply to Cat Cancel reply