#startasking How does infertility impact loved ones?

Infertility doesn’t just impact the patient but their entire family and social circle as well. Family relationships can be particularly difficult to navigate after an infertility diagnosis. I asked my mother, Judy Horn, to write a blog post reflecting on how it feels to have a loved one with infertility. She shares her thoughts below. Thanks, Mom, for sharing your story.

– Elizabeth

In the late 1980s, when my daughters were small, I watched a movie on television. The story line was of a family with four daughters. As the story unfolded three of the daughters were either pregnant or had children and it was apparent that the other daughter was struggling with infertility. It was a Lifetime movie, full of drama and at the conclusion had a typical happy ending. I can remember thinking of my girls and hoping that I never had to deal with that situation. For some reason, perhaps a vague premonition of events to come, I never forgot that movie. And so today, nearly thirty years later, I am sitting at my computer trying to find the adequate words to describe what it is like to have a loved one with infertility.

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A Polaroid of Judy with Elizabeth at her kindergarten registration in the early 1980s.

When my daughter Elizabeth finally told me about her struggle with infertility she was a couple of years into it. I can remember immediately thinking that this would be an easy fix. She was working with a doctor and I was pretty confident that they would find a solution and before I knew it she would be pregnant. At the time I had no idea how complicated it would become and how low the success rate is. I can remember waiting for months for information. Because of the nature of this disease and because Elizabeth was like most women dealing with infertility, we didn’t talk much about the process, so, I began searching the internet for any information I could on the subject of infertility.  When I would see or talk to her I would look for any indication that she was or was not pregnant and as the months passed the assurance I had felt before about the “easy fix” began to evaporate. I became frustrated and just wanted to do something, anything that would help, but there was nothing I could really do. At one point I began to feel guilty and wonder if in some way this was my fault, that I had done something during my pregnancy that resulted in Elizabeth’s infertility.

I often worry about saying the wrong thing, about saying something unintentionally that will be hurtful or inappropriate. There is a list of words and phrases not to say to someone dealing with infertility, but sometimes it’s difficult to remember and I know I’ve said things without thinking. When that happens, I feel so bad and I get angry with myself for not getting it right. Once the words are out, there is nothing that can take them back and never the right words to express my regret for speaking them.

I began to feel guilty and wonder if in some way this was my fault.

Eventually, three years ago Elizabeth did become pregnant. We were going away together on a weekend trip and when I stopped by to pick her up, for some reason I had a good feeling she was pregnant. She said nothing about it, but when I had to give her an injection that evening, I was even surer that I was right. The next day we went shopping and I sat while she tried on clothing and enjoyed the fashion show. The good feeling grew as I noted the number of shorts and skirts that had elastic or drawstring waists. Sadly, the good feeling would not last more than a few more hours. Elizabeth had gone for blood work that morning and received a call as we were shopping that her numbers were down and the two little ones that had implanted after IVF were no longer living. We drove back to the hotel in silence, Liz crying quietly and me struggling to concentrate on my driving as the tears blurred my vision. I spent that afternoon watching her sleep, feeling helpless and useless, knowing there was nothing to do but just be there and that seemed incredibly insignificant.

Elizabeth and Judy at Antiques Roadshow in Detroit, the day after learning of Elizabeth's miscarriage.

Elizabeth and Judy at Antiques Roadshow in Detroit, the day after learning of Elizabeth’s miscarriage.

Several months later Elizabeth had her last embryo transfer. It was unsuccessful. I have five living grandchildren that give so much happiness. I am thankful for them every day. However, I will forever be reminded of Elizabeth’s children and mourn their loss. There is a list that will never end of things that I will miss with them. I will never give them a bath or have the joy of watching them grow, run my fingers through their soft hair, tell them how much I love them or hear their sweet voices. I will always long to know what they would have looked like and I will never forget them.

There are many words I could use to describe the past five years. Just of few of them are disappointment, guilt, worry, regret, loss, love and balance. Balance because I have to balance my feelings about all of this and remember to appreciate the good things and not dwell too much on the sadness. I have much to be thankful for.

Last and most importantly, I love her so much and I am proud. I am so proud of Elizabeth and how she has taken a personal tragedy and made it into something that will help others cope with their own heartaches. In just two years ART of Infertility, an exhibit she created, has helped others tell their stories and deal with their own infertility journeys. It has grown into an organization that educates, raises awareness and provides a creative outlet and a community of support for those experiencing the effects of their own infertility disease. I will never know how many people she has touched with her work or the effect that it will have on them and the lives of others, but I am confident that this legacy she is creating will be long-lasting and a catalyst for positive change for many years to come.

#StartAsking: What is #NIAW?

Over the course of this year, we, at the ART of Infertility have been busy generating new content to connect you with stories and artwork representative of infant loss, miscarriage and infertility advocacy. We have been grateful for how many of you have shared these stories on your social media pages and have engaged through commentary with this content.

This week, though, it may seem that we are a bit quieter than usual. And this is for a reason — we will be prepping stories for National Infertility Awareness Week (#NIAW).

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Beginning April 24 – April 30 (#NIAW week), we will be featuring a host of stories asking the general public to #startasking about issues and topics related to infertility — a topic that often isn’t thought of until you find yourself going through it. Given how so many fail to really realize what infertility is until they are confronted with it in their own lives, our mission during this week be to reach out to those who often have very little contact with the topic of infertility.

While many of us in the infertility community frequently share our stories and try to make infertility more visible to the general public, we believe that #NIAW offers a unique moment to connect with those who often are not infertile and ask them to join us in becoming an infertility ally.

To provide a little preview we are sharing with you all a little more information about what #NIAW is and how to begin #startasking. We ask that you, too, share this across your networks and invite future allys to engage in the conversation!

Danielle, our social media college intern, provides some #NIAW info on how others (like herself who are not infertile) can join the conversation:

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Why #NIAW?  This week is all about spreading awareness of infertility issues to people who may not be sure of what it exactly it means. Not only is it a time for people to bond over their stories and situations, it is also a time to create a conversation that can educate people on all different aspects of infertility. Many people go through issues when trying to conceive and this is the week to spread the word. You can learn more about how support the infertility community here.

What does #NIAW talk about? One message that is important to spread to others during this week is that many people go through struggles when trying to create a family and that it is okay to talk about it. When I first joined this project, I was an outsider who did not realize how many people are affected with these issues. The amount shocked me and I wondered why I didn’t know it before. It seems that many people do not feel comfortable sharing their stories because they don’t want to admit to people that they are going through fertility treatments because it would make them feel judged or “less than”. This is completely understandable because when people don’t know anything about a topic they usually resort to myths and stereotypes that are not true. This is the week to challenge those stereotypes and to give people a better understanding of the reality of infertility.

How can I become an #NIAW ally?  Ultimately, this week is all about community. It is a time where many people connect with others and create lifelong bonds and friendships that they might be lacking in other aspects of their life. Going through infertility is something that many people can’t possibly understand or relate to because they have not gone through it themselves or are uneducated on the topic. This week allows people the opportunity to meet others who understand exactly what they are going through and can talk about their situations free of judgment. It is also creating a new community with family and friends who may not be aware of the anger, frustration, and many other emotions linked to fertility problems. By starting the conversation with them, they will have the ability to learn about the emotional rollercoaster and the medical terms and conditions that surround infertility. You can check out RESOLVE: The National Infertility Association’s website for a list of tips and resources for individuals to become better educated on the topic of infertility.

How Can We Keep the #NIAW Conversation Going? Once this week is done, it is important to not let the conversation about infertility die off until this time next year. By continuing to talk and raise awareness for the issue, many people are going to feel better about discussing their own issues, allowing the infertility community to grow and expand which will give people the courage and support that they might need. Taking the opportunity to talk about infertility in your daily life will help relieve the stigmas and bring attention to the important matter. And, remember, you can always #startasking!

We look forward to launching #NIAW with you on April 24th and invite you to always #startasking!