The Week I Can’t Forget: NIAW

 

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Last year, this day – this Sunday, we were anxiously awaiting Monday. It was going to be our second fresh IVF retrieval. I had spent more than a month preparing, taking shots, getting uncomfortable ultrasounds, blood work done every other day or even daily, taking pill after pill – all accumulating to 3 big milestones – egg retrieval day, transfer day and beta (pregnancy test) day.

Ironically, this second IVF aligned perfectly with NIAW – National Infertility Awareness Week. NIAW is a movement that was started in 1989 to help reduce the stigma about infertility and educate the public about reproductive health and issues that make building a family difficult for 1 in 8 couples in the U.S. That’s 15% of couples in the United States. It’s a week to help spread the word about something that is somehow, for some reason, still taboo in today’s day and age. And a week for those who do not want to openly spread the word or share their story, to feel a little less alone by hearing others do so.

Last year, I thought, hoped and prayed that this week would forever change our lives and that we’d be welcoming a baby into our world nine months later. It did change me, for the better and for the worse, but we did not get to welcome that baby into our world, despite the IVF having worked. This year, being 8 months pregnant during this week, has me reflecting a lot on the past year. I have realized that while I may be pregnant now, I can never stop fighting this battle. If anything, I need to fight harder, with more strength than before and with more conviction. Because there are still so many out there that won’t get the same ‘ending.’ They may not ever get pregnant and it’s the unfortunate reality of infertility. We may never have a second child or a sibling for our daughter. It might start to seem mute, at some point, to read infertility posts from a person who has gotten pregnant. Maybe some people won’t get it. But whether I like it or not, it will always be  part of me, our story and our daughter’s story. She’ll know, that while she wasn’t the result of our IVF cycles, she’ll know everything we went through to try to build our family. She’ll know how to advocate for her health someday, as she may inherit my blood-clotting gene and Endometriosis has a hereditary component.

So today, I’m going to follow this year’s theme of NIAW, Listen Up! and touch on a few topics that often come up for those struggling with infertility.

Listen Up: Infertility is a Disease
Infertility is a disease. It’s even defined by the World Health Organization (WHO) as a disease of the reproductive system. Please don’t treat infertility as if it’s a choice. As if we just aren’t ‘doing something right.’

Listen Up: Infertility Cannot Be Cured by Relaxing
Infertility is not caused by stress. Yes, it can be stressful trying to get pregnant and seeing a negative test month after month, but it is not the cause of the infertility. Telling your infertile family member or friend to ‘just relax’ is not helpful. In fact, even if you mean it as helpful advice, it’s probably making them feel bad – and trust me, they’re already feeling bad, scared and unsure. Infertility can be caused by a number of things – PCOS, Endometriosis, not ovulating, blocked tubes, poor sperm mobility, low sperm count, other medical reasons etc., but stress is not the reason. I’ve said this before, but I’ll say it time and time again. While we did get pregnant, somehow, without medical intervention after years of treatments, the reason was absolutely not because I wasn’t stressed or because I relaxed or wasn’t on hormones. I had surgery the month before to clear out endometriosis, it could have been that. It could be that we caught just the right ‘golden’ egg that wasn’t compromised like all my other eggs had been in the past. Infertility is still fairly new to the medical world and even they don’t have all the answers yet. But, I promise you, it’s not because I wasn’t stressed.

Listen Up: Treat ‘Advice’ with Care
This is a tricky one. Everyone wants to feel like they have something to say when a friend or family member is opening up about something like their infertility. You want that person to know you care and that you’re on their side (in most cases). But, unless that person specifically asks you or you can offer some real-world advice, please think before you speak. Because honestly, they probably just want someone to listen to them or have a shoulder to cry on. They don’t want to hear things like: it was meant to be, all in God’s time, just relax, just adopt, you’re young so you have time, or my sister’s best friend’s dog groomer was infertile and now she has 6 kids. While all have good intent, when you’re in pain, you just want to know someone is there, not necessarily their advice.

Listen Up: A Loss is a Loss
Unfortunately, often infertility and miscarriage are linked. No, definitely not every time or every case, but many of us dealing with infertility have also lost a baby. Whether that baby is 4 weeks old or 20 weeks old, it hurts. I think about the baby we lost last year after our second IVF more than one might think. Obviously, the love I have for Baby K is so big I can’t explain it, but I also just can’t forget I was pregnant once before, even if only for a short time. He/She gave me a gift no one else can. I heard the words, “Ashley, you’re pregnant” for the first time ever. It was terrifying, scary and exciting all at once. I knew, given our HCG levels being so low, that we may lose him/her, and I think I knew in my heart he/she might not make it, but boy, I still loved that poppyseed sized baby.

Listen Up: My Story is Not Their Story
I struggle with this aspect of our story often. We are the couple that endured several failed medicated rounds, failed IUIs, failed IVFs, surgery and then suddenly got pregnant. I’ve heard people say they like to tell my story to others for hope. And while that may be well intended, I cringe a little bit when I hear it. Because every story is different and every person is different. When you’re the person struggling and you hear from your friend that so-and-so got pregnant after their treatments failed, their reaction might not be as positive internally as you think. They might be thinking, “Well that’s not ME.” And you know what? They’re right. Sometimes it was hard for me to hear those stories myself when we were going through treatments because when you’re in the thick of it, you start to realize that IVF doesn’t always work. That this might not end how you hope. So when I tell my story, it’s not because I want people to think they’ll have an ending like me, but because I don’t want them to feel alone. I want them to know they can reach out to me for a listening ear if they need it. I want them to know I get how tiring shot after shot, appointment after appointment and failed test after failed test can be.

Listen Up: Pregnancy After Infertility Does Not Make It Disappear
Just because we got pregnant, does not mean I am no longer infertile or that I no longer worry. I have PCOS, Endometriosis and Factor V Leiden. I will always have these disorders and diseases. Being pregnant after going through so much comes with some feelings that are hard to internalize. Some people have asked how I like being pregnant and I have to say, I’ve been lucky as I wasn’t sick in the beginning, but mentally? Sometimes I felt, and still do, feel like I’m on the constant look out for something. So I’ll answer with: “Physically, really well, but pregnancy has been hard mentally.” And because so many people know our story, when I say that, I think they’ll get it, but they don’t and I end up with a funny look. When you’ve had so many failed infertility treatments and your body just does not do what it should, especially as a female, it’s hard to trust that it will during pregnancy. You begin to develop a distrust for your own body and what it is capable of doing. Couple that with a miscarriage in the past and you really wonder sometimes if it’s too good to be true. For me, infertility treatments and losing a baby did take away some of the ‘magic’ of being pregnant. Don’t take that the wrong way, it’s not that I’m not excited or not grateful, but it has been difficult to remain confident that my body will do what it should. Will you get to meet this baby? Can your body carry a pregnancy to term? It took me months to comprehend this was happening, and truth be told, I’m still not sure I’ll believe it until she is in my arms, safe.

I’ll end with this.

If you are struggling with infertility, you are not alone. You may feel alone, beaten down and defeated, but know you are not alone. There are many of us that are going through or have gone through this struggle and we can be there for you. Resolve has some great resources to get you connected.

If you know someone struggling with infertility, remember to just listen. Be there for them. Let them know you care, but be considerate and instead of trying to relate {if you really cannot} or offer advice that may not be accurate, offer to be their listening ear.

I was blessed with a pretty special group of people in my life. And I feel like I had an amazing support group and I know that’s not the case for everyone. So thank you to our family, friends and special ttc {trying to conceive} friends for being there and for continuing to be there for us.

 

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