The Real Reel: Tokophobia and Infertility

I wrote this last week, and wasn't sure if I was actually going to post it. I went back and forth, because doing so would be putting myself VERY out there for the world to see, but I ultimately decided to do so, in the hopes of helping anyone else struggling with similar things to realize that you are not alone. 

Saturday, August 26th 2017

I’ve been doing a lot of reflecting today. I think Facebook is one of the best and worst inventions of my adult life. It is amazing because it allows us to keep in touch with so many people we would have otherwise lost contact with years ago. It is amazing because it helps us to reconnect with friends we thought we would never see again. It is amazing because we are always up to date on birthdays, anniversaries, weddings, and any other event of a friend or family member. It is amazing because we never miss anything.

Conversely, it is terrible because we never miss anything. It is terrible because it gives most of us anxiety in some form or another. There are even studies out there that show how Facebook usage has been linked to anxiety/depression. It is terrible because we become a slave to the app, the notifications, the checking to see how many likes or comments we’ve gotten on a post. It is terrible because we inevitably end up wasting hours upon hours of our time on it when we could have been doing something productive, or reaching out personally to a friend, rather than posting to all 2361 “friends” we have.

It is terrible because it somehow leads everyone to believe that they must only share the good in their life, and it skews our own reality and those with whom we associate on Facebook. That’s not to say we shouldn’t be proud of our accomplishments, but our lives are very one-sided on Facebook. We post the highlight reel. We hide the real reel. When we’re struggling, we don’t usually post. We assume either (a) “people don’t want to see this side of me” or (b) “*I* don’t want people to see this side of me.”

I’m going to change that right now, for me. I’m going to stick myself out there and be vulnerable. I’m going to look past both A and B and show the real reel. This is not for sympathy, but more to let any of you out there struggling with the any of the same things know that you’re not alone. Because I have felt so very alone on this for so long.

1.     I have tokophobia

2.    I have infertility problems

3.    This is a TERRIBLE combination

To start, here is the definition of Tokophobia:

Tokophobia is a pathological fear of pregnancy and can lead to avoidance of childbirth. It can be classified as primary or secondary. Primary is morbid fear of childbirth in a woman, who has no previous experience of pregnancy. Secondary is morbid fear of childbirth developing after a traumatic obstetric event in a previous pregnancy.

For brief context. There are 2 reasons why I feel like tokophobia is a little different than many others:

(1)  Most phobias can be conquered in baby steps. While I believe all phobias can be conquered, some are easier than others. For example, if someone wants to conquer their fear of spiders, they can do it in steps. They can start by looking at one behind a glass cage. Then looking at it out of a cage from a distance, then being closer to it while someone else holds it, and eventually holding it themselves. At any point in any of those steps, if they can’t handle it or need to take a break, they can remove themselves from it. Once you’re pregnant, you’re pregnant. There is no easing your way into it. There is no “wait hold on, slow down.” Once you’re pregnant, buckle up. Because there is no turning back.

(2)  Most phobias are usually considered irrational. For example, someone who is claustrophobic may have a panic attack if stuck in a small space. But there is likely no real danger present. However, pregnancy and childbirth still kill women each year. Are the odds high in developed countries? No. But it’s still a possibility.

·         A few years ago, I had a friend whose wife was expecting their second child. One day, she just died. Her symptoms of a greater issue mimicked the same symptoms of pregnancy, so no one thought to test for the greater issue as everyone figured it was just normal pregnancy swelling, etc. It wasn’t the pregnancy that killed her, but it was the pregnancy that caused her symptoms to go undetected.

This is not even something I realized I had until I was married. But after some therapy and deep reflection, I was able to trace it back to witnessing a traumatic birth when I was 12 years old. From that point on, I wanted nothing to do with babies. I hated babysitting, I ran the other way if someone said “come feel it kick”, I never wanted to hold so&so’s new baby, and I most definitely didn’t want to hear about any friends or family’s birth stories. For years, I had no idea why I was like that.

Subconsciously, I was also afraid of intimacy of any kind. My first real boyfriend wasn’t until I was 22. Sure, I wanted to date. In fact, I desperately wanted to date. But again, subconsciously, I knew that dating could lead to kissing, kissing could lead to sex, and sex could lead to pregnancy/labor, so I was always scared to get close to anyone, and ended up likely scaring off many potential suitors.

The following year, I met Eric, my now husband of 7 years. Family is greatly important to both of us. Of course I wanted to be a mother. And I wanted us to have kids together and have that idyllic life everyone dreams of. We (I) decided we should wait a year before starting to try for kids. (At this point, I still had no idea I suffered from Tokophobia). I said I wanted us to have a year to be able to get used to marriage and all the changes that would come with it before throwing a baby into the mix. Year 1 ended, and for reasons x, y, and z I said I need another year. He was patient and waited another year. It all came to a head one day when he was upset (understandably so) because I kept trying to push it further down the road. He wanted a valid reason, and I didn’t have one- I didn’t know why I kept wanting to push it further. Suddenly at the peak of this “discussion”, I blurted out “because I’m terrified of being pregnant!” That was news to me just as much as it was news to him. I never understood ME until that moment.

I started going to therapy and somewhere in year 2-3 we started trying for kids. My anxiety was so high that the day after the first time we tried, I had to call in sick to work. I couldn’t function. I now had to wait several weeks before I knew if “this was it.” Every waking moment of every day with any slight change in behavior or cravings, I would stop and think “does that mean I’m pregnant?” After 5 or 6 months of trying, I was late. I was terrified and I didn’t know what to do. I had never been so conflicted in my life. On one hand, I desperately wanted a child – I wanted to start our own family. I wanted to be “Mom”. But on the other hand, that would mean there was no turning back and that thought terrified me. Turns out, it was one of those rare months where I was a few days late. Relief and grief set it simultaneously. One more month of safety from pregnancy, but one more month of failed attempts and no children.

Eventually, I just wanted to get it over with. I felt like each month I was riding a roller coaster that was slowly getting to its highest peak, and right before it dropped, the ride broke down and I had to start over. I felt it so cruel that someone who fears pregnancy to this degree struggles this much to get pregnant. I just wanted it to be over with. I wanted to GET pregnant so I could start working through the emotions.

After about a year with no success, we decided I would go back to school to get my MBA. We weren’t having any success, and going back to school was something I’d always wanted to do. Since MBA programs can be quite rigorous, we decided to take a break from trying. I would need to be able to focus on classes, internships, networking, job fairs, etc.

A few months before I graduated, we started trying again, but still with no success. Each month was that awful mix of emotions where I was so relieved that I didn’t have to live out my worst fear, but so devastated that we still had no family of our own. It’s really quite difficult to put into words that dichotomy of emotions. Turning 30 was especially hard for me. So many of my friends my age had not 1, but sometimes 2, 3, or even 4 kids. I still had none. I tried to keep busy so I wouldn’t think about it. I did a community theater musical together in summer of 2016. By the end of that run, 3 women in the show had announced they were pregnant. It felt like I couldn’t escape. Whether in real life, or on Facebook, everywhere I turned, there was another announcement of another friend of mine who was expecting.

I finally got to the point where the desire for children outweighed my fear, (this by no means lessened the fear) and in November of 2016 I mustered up enough courage to go to an OB/GYN and actually get tested. I cried the entire visit. A few weeks after that visit, I found out that my younger sister, who had recently married, was pregnant. Words cannot describe the pain I felt at that announcement. To be clear, I held no ill-will toward her. I was happy for her. This was what she wanted, as nearly every husband/wife eventually wants. Some women desire to be mothers from the time they are young, and this was my sister. She was finally going to get to fulfill that dream. But, that didn’t make it any easier on me. I couldn’t even think about it without welling up with tears. I had many breakdowns the following weeks.

Due to a job change and subsequent insurance changes, we had to put things on hold from December 2016 to March 2017 before trying again. Once March rolled around, we resumed trying. Month after month, still no success. Month after month, anxiety day in and day out always wondering if “this was it”. I tried to keep busy so I wouldn’t think about it. We did another summer show. Someone we knew came to see our show and she was 8 months pregnant. She was also unmarried. And I cannot explain to you why the first thought that came into my head was “has she considered adoption?” but that was all I could think about. Eric and I talked about it later that night and he had thought the same thing; but how do you bring something like that up? I had another pretty low moment that night, and almost on a whim, Eric posted (with my permission) to Facebook that we were interested in adoption if anyone knew of anyone.

She saw the post, and we ended up meeting with her the following week. She was very open to the idea. We called a lawyer to see what the necessary paperwork would look like, etc. She hadn’t decided 100% yet, but the odds seemed pretty good. Suddenly, for the first time in years, that constant pressure I felt of “I should have kids by now” was lifted. The pain I felt every time I saw another “we’re expecting!” announcement, subsided. The guilt I felt for letting tokophobia make our journey even harder was finally gone. The fear attached to babies for so long was no longer there. I tried not to get too excited, but I couldn’t help it. We were likely finally going to be parents! And *I* wasn’t going to have to go through pregnancy/labor to get a little one! My sister was due the same month, so it looked like she and I were going to end up having babies at almost exactly the same time, just through different means! Suddenly, that pain wasn’t there either. I finally felt relief. I finally felt peace.

Then, the birth mother let us know that she had decided to keep the baby. We were devastated. (We don’t fault her for it at all – we knew that was a possibility and she of course has every right to that decision.) I tried going into work the next day, but 2 hours into the day, I couldn’t function. Any time someone tried to talk to me, my eyes welled up with tears. My boss let me take the rest of that day off, to which I will be forever grateful.

Suddenly, without warning or preparation, ALL of those emotions I had been temporarily freed from came surging back, like a force to be reckoned with. Once again, I felt inadequate, broken, frustrated, and beaten down, and I hated getting on Facebook to see how many people were happily announcing their newest addition. It was this point when I decided to start my Facebook Fast. I couldn’t handle it anymore. I needed time apart from social media, because it was only sinking me deeper.

About a week after we got that news (and 2 days into my Facebook Fast), my sister had her baby. A few days prior, I had finally called back the OB/GYN to get my test results from eight months ago. They told me they would call me that Friday. I got a call that my sister had had her baby, and a few hours later, got a call from the OB/GYN telling me that Eric was actually fine, but that the issue was with me, and that I needed to start taking a medication to improve our chances. Somehow this news was just the trifecta of news. Within a few short weeks: a failed adoption, my sister had her baby, and I found out that very same day that I’m the reason for our difficulty getting pregnant.

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Honestly, I think the Facebook Fast saved me from even more heartache and pain. It was so liberating to not constantly see all these people move forward in an area of life I wish so desperately to move forward in. As I stated in the beginning, this is the real reel. This post isn’t meant to end with a happy ending – the ending hasn’t happened yet. I WILL be a mother one day and I WILL overcome tokophobia one day. The next step is to take this medication and see what happens. Once pregnancy actually happens, I also fully intend to keep an active blog of my journey for anyone else out there who suffers from tokophobia. To all of you out there who desperately want children, but have tokophobia and/or infertility problems: you are not alone.

Link to Tokophobia Support Page: https://www.facebook.com/groups/tokophobiasupportnetwork/ 

Note: If anyone wants to talk to me about this, PM me on Facebook and I'd be happy to discuss. (facebook.com/marisajk)