“You can’t have kids? Here, take mine” and other hurtful things said to those with Infertility.

Over the weekend I went to visit a dear friend and her beautiful triplets. On the way out of her neighborhood, I stopped at an estate sale. I always find it interesting to see what kinds of items are being sold. Furniture, old family photographs, fashion from across the decades. As I was browsing, another customer was negotiating a sale with the woman running it. He wanted the book case, but would have to pick it up later since there wasn’t room for it in his vehicle with his kids in tow. “Unless you want to watch them?” he teased. “Hey, you can even keep them if you’d like!”

The woman replied, “No, I can’t have my own kids. I’m certainly not going to watch yours.” Internally, I shouted to her, “You go, girl! Good for you for speaking up!”

The man responded by telling her he believed children were a gift from god. It’s all according to his plan who gets them and who doesn’t. Some people have 12 kids, and some don’t get any, he explained.

I’m imagining after reading the lines above, you are having a similar reaction to the one I had, and I imagine the woman who was running the sale had. Cringing and filling with both intense anger and sadness. I was immediately filled with a desire to educate both of them about The Art of Infertility. The woman, for support, and the man so he might think about how the words he speaks could affect the people who hear them. They both received my business card and an elevator speech about the project.

After that experience, I thought it might be a good time to re-run a list of hurtful things and helpful things to say to those with infertility that we’ve compiled from ART of IF participants. We originally ran this content in December of 2015.

Which of these items have you heard the most? Is there anything you would add?

-Elizabeth

Hurtful

1 “’Oh, you are still young, you have time’. Being young and having time has nothing to do with what caused my infertility. Infertility is not a disease that only happens to women over 35, it can happen to any woman at any time.”

2. “When are you going to make your mom a grandma?”

3. “‘You can always adopt.’ This minimized that pain that I was experiencing at the  possibility of not being able to have a child that was genetically mine.”

4. “’Once you stop trying you’ll probably conceive naturally’ – by countless people who apparently can’t comprehend that when you don’t have tubes this is impossible. And, yes, I am a strong Christian woman and believe anything is possible for God – but without a delivery system, if I became pregnant it would be with the 2nd coming of Christ and I don’t really know that I could handle the responsibility.”

5. “Infertility is nature’s way of population control. ”

6. “I had a coworker say to me ‘no one else in the office is pregnant… I think you should be next!’ I had to just try to laugh it off and made some sort of reply like ‘yeah, yeah, maybe soon!’ When she made a comment after that about maybe I’m ‘just a dog person,’ that is when I felt like telling her about our struggles, and although I am a ‘dog person,’ I also hope to be a mother someday as well.”

Inconceivable by Aine Quimby. Oil on canvas. Part of the ART of IF collection.

Inconceivable by Aine Quimby. Oil on canvas. Part of the ART of IF collection.

7. “‘Who has the problem with not getting pregnant, is it you or your husband?'”

8. “Variations of, ‘I don’t know what I’ve do without my kids’, ‘My life wasn’t complete until I had kids’, ‘Being a parent is all that matters’, ‘Being a parent is the most important job in the world’, ‘You don’t know love until you have a child of your own'”

9. “We got them all!   ‘You’re doing it wrong.’,  ‘Maybe you weren’t meant to be parents’,  but my personal favorite was from an old man who told my husband ‘Let it soak.’  – Still to this day have no clue exactly what he meant but we laugh about it.”

10. “We are Christians and regular attending members of a Seventh-Day Adventist Church. We had people say to me/us ‘well if it is in God’s plan you will become parents.’ The people who said this were parents. My thoughts were: so God thinks you will be a better parent then me? – I doubt it. So for all the people who abuse their children and have them removed from the home, and traumatized by their parents are apart of God’s plan, but me not being a parent is? – I doubt it!”

11. “‘You can borrow my kid(s) if you want.’ or ‘Do you want some of my kids? You can have them!’”

12. “Sometimes it’s what people don’t say that hurts the most. My friends have had more babies than I can count in the last 4+ years. Every time I go to the baby department and buy them gifts. It rips me up and takes everything I have to hold in the sobbing until I get to the car. I think people take it for granted. Not once has anyone ever said, ‘Wow, that must have been really difficult for you. Thank you for loving us so much that you would subject yourself to that hurt.'”

“Don’t say, ‘My life wasn’t complete until I had kids’, ‘Being a parent is all that matters’, ‘Being a parent is the most important job in the world’, ‘You don’t know love until you have a child of your own'”

13. “‘Everything happens for a reason. It will happen when it is meant to happen.'”

14. “A lot of people always refer to the most common phrase during the infertility journey, which is to ‘just relax and it will happen.’ As much as I wish ‘relaxing’ would cure that, it doesn’t.”

15. “‘I know it will happen. You just have to give it time.’ No one can know that the treatment will work and I felt like it minimized my pain.”

16. “’My friend was going through the same thing, and when she just stopped worrying about it, she got pregnant.’”

17. “The worst thing people have said is implying that my energy created the infertility like through fear, emotional stress, emotional barriers, etc., and to simply get over it because we could adopt or do IVF or surrogacy without knowing the financial and emotional costs of our options.  They completely negate the emotional aspect of infertility and how it rocks your world as you know it.”

Grief in Black and White by Sarah Gough. Photography. Part of the ART of IF permanent collection.

Grief in Black and White by Sarah Gough. Photography. Part of the ART of IF permanent collection.

18. “I was told I was being dramatic. ”

19. “I cannot remember the comment exactly, but it was something along the lines that I should try to have a baby ‘at any cost.’ As if it wasn’t okay to be concerned about protecting my marriage, our finances, the health of my body, etc. I also recall someone saying, ‘I know you don’t want to talk about it, so I won’t ask you.’ That wasn’t true for me. It’s true for many women, but I did want to talk about it.”

20. “‘Maybe your husband is cheating on you and giving all of his good sperm to someone else.'”

21. “This isn’t a terrible thing to say by any means, but a very common question is: ‘Do you have kids?’ It’s a little uncomfortable. It’s a quick response, no we don’t. But so much comes behind saying those few words. People don’t know – is it because you didn’t want them? Because you tried and couldn’t? What is behind that statement? People don’t usually follow up and ask why not (not that they necessarily should). We’re still trying to figure out the best way to answer that question without the uncomfortable silence that follows.”

22. “‘Flip her over. It’s a whole new ball game.'”

23. “Complaining about how hard your pregnancy is. You get a baby in the end! It does not make me ‘feel better’ about never getting to experience pregnancy. I’ve been through far worse pain and misery, and I never received a miracle in exchange.”

24. “I think that some of the worst things actually came from my mom.  With the initial troubles, she’d repetatively tell me that she didn’t understand why I couldn’t get pregnant because my dad just had to look at her funny.  Gee, thanks mom for that image.”

25. “‘Drink a ton & enjoy some recreational drugs’ because that’s what worked for them.”

Helpful

1. “When I was going through my miscarriage my husband’s grandmother called me, and told me her story about her loss. We sat on the phone and cried together. She knew no words could help but she just wanted to be there. To share a story she didn’t share a whole lot made me feel supported.”

2. “Understand I’m doing the best I can with a total shit situation.”

3. “Be open to discussion and listening. Most days all I wanted or really needed was someone to listen and really HEAR me. I needed someone to say it was okay to be upset, it was okay to cry, I was grieving a major loss.”

4. “I found that telling people what I needed from them helped. Many times they were clueless as to how to help me. Just knowing I had someone there willing to hear me out whenever I need was amazing.”

5. “Say ‘I’m sorry you’re going through this.’”

6. “Ask me about it and about my losses…. Sometimes I would feel like my babies only mattered to me. It wasn’t until my sister wrote me a letter and told me that she felt their loss too that I truly felt like someone else cared about it. And that meant so much more than she probably ever will realize.”

7. “The best way my family and friends have supported me is to educate themselves so that they can at least understand the medical aspect of what is happening to me.”

8. “Be there when I need to talk or cry and on the opposite end of that, allow me the time I need to myself, to understand that I may not always be up to hanging out with them while they were pregnant… or with them and their children.”

9. “Our parents would stop asking us questions about doctor appointments and wait until we told them info. They didn’t want to bombard us with questions and they were respectful of our choices.”

10. “Just doing things to keep my mind off of what I was going through. Inviting me out to do things I enjoy, like getting spa treatments, going to sing karaoke, going to wine tastings, etc. Many people asked if they could pray for me and I really liked that.”

11. “My family: mom, sister and aunt all gave me the progesterone shots through both of my IVF cycles.”

Failed IVF #1 (September 10, 2015 - October 9, 2015) by Sara Nelson. Mixed media. Part of the ART of IF permanent collection.

Failed IVF #1 (September 10, 2015 – October 9, 2015) by Sara Nelson. Mixed media. Part of the ART of IF permanent collection.

12. “One of the most memorable ways people helped support us was fundraising for IVF. We set up one of those health donation websites and had a garage sale. Family members and friends had bake sales, everyone donated items for the garage sale, and even coworkers from family members helped out. It was really really humbling and brought us to tears once to see all the support we were getting.”

13. “The people who have shared their experiences of infertility with me have been extremely supportive.”

14. “Honoring my request that if I wanted to talk about it I would and not ask questions otherwise. When I needed someone to talk to and they really listened vs. trying to make me feel better or talking about their own fertility struggle.”

15. “Financial help was hugely important to me. I wouldn’t have opportunity to seek alternative therapy, like acupuncture, without help from my parents. To me, there are already so many costs of fertility treatments, and I was unwilling to try acupuncture because it was just another cost.”

16. “The best ways that our friends and family have supported us is just by listening and encouraging us. They are positive, but they are realistic in having the same expectations as us, which is hey, it might happen, it might not happen, but you have to give it a try.”

17. “They never tell us we should or could have done things differently, and instead point out to us that we are just one step closer to having a baby. You guys found out what doesn’t work; now you get to move onto the next thing.”

18. “Letting me cry. Taking me out to dinner. Letting me avoid baby showers and kids’ birthday parties with understanding and not exasperation or frustration. Giving me space to vent and grieve.”

19. “I have discovered some very special friends through this process.  They have best supported me by being present and listening, not judging or offering suggestions/opinions. They ask me what me what I need and strictly follow any guidelines that I set out. For example: I hate it when people offer solutions so I’ve asked my friends to never offer solutions.  The ones who listen warm my heart.”

Participants at the ART of IF Women Write the Body Workshop in East Lansing, MI.

Participants at the ART of IF Women Write the Body Workshop in East Lansing, MI.

20. “Help me to feel I’m still me even though I might feel a piece of me is broken.”

21. “When I would talk about the idea that there are many ways to be fertile, that bearing offspring is one way, but not the only way, and that fertility encompasses so much more – there were people who ‘got’ what I meant and people who didn’t. Those who ‘got it’ were excited for me and excited to see what other endeavors I might pursue in life. That made me feel supported.”

22. “Many friends have tried to support me just by asking what we need. Usually I tell them I just want to be allowed to hurt. The best friends I have are willing to let me hurt, are willing to sit through awkward silences and haven’t been hurt or offended when I’ve politely declined to attend their baby showers or their children’s birthdays (there are some, believe it or not, who take it personally and have made me feel bad about it).”

“Letting me cry. Taking me out to dinner. Letting me avoid baby showers and kids’ birthday parties with understanding and not exasperation or frustration. Giving me space to vent and grieve.”

23. “Please spare me any conversations about pregnancy, childbirth and breastfeeding. These situations make me incredibly uncomfortable and I’ll just find a chance to try and run away. It’s painful to hear these conversations, they tear at your heart. And if I know that you are aware of my situation & you bring up these topics in front of me, I feel even more hurt & isolated.”

24. “Do not complain to me how exhausting and hard it is raising your children. Nothing in life is easy that’s worth something. Think about how that sounds to someone who has been to hell & back trying to have children.”

25. “Really, I just wish people could think twice before they speak. Try for a minute to put yourself in our shoes. Be compassionate. If you have a friend or family member that can’t have children, don’t ignore them. Do tell them you are thinking of them. Do tell them you understand they’re going through a hard time. Do tell them you’re praying for them if that’s what you do. Just try to understand and be more sensitive.”

Group works to educate its community and raise funds for infertility treatment.

We’ve been pretty quiet on social media since returning from San Francisco because we’ve been busy working behind the scenes. Maria has been hard at work on her dissertation and I’ve been working with a student to reorganize and inventory all of our supplies and artwork. We’ve both been working on our 501(c)(3) paperwork and working with hosts in cities around the country to plan upcoming exhibits and workshops. Those that are confirmed are on our schedule. We hope you’ll join us!

In today’s guest blog post, we’re bringing you the story of a group of infertility friends in Indiana who has put together an infertility outreach and fundraiser event in their community. They plan to provide infertility education, fun activities for kids and adults, and to raise money to help those in their group pay for treatment. Thank you Brandy and Kelly Jania, Jennifer and DJ Cavenaugh, Jessica and Steve Ziller, and Amanda and Sherman Wallace, for educating your community and sharing your stories!

-Elizabeth

Group works to educate its community and raise funds for infertility treatment.

On Saturday June 21, 2014 the RESOLVE Peer-led Infertility Support Group first met at an eclectic coffee shop in Crown Point, Indiana. It began with the intention of preventing women and couples from feeling the isolation that infertility can cause. Brandy, the group founder exclaims, “I have to be honest. I started the group for kind of selfish reasons because I needed support! I never expected to gain true friendships with some of the strongest women I have ever met!”

The group began with three women and as of June 2016 the group has seen 35 women participate at various levels. As the group passed our two-year anniversary we took a moment to celebrate four miracles and the highly anticipated arrival of one rainbow baby expected in August!

These women not only offer physical support by meeting on a monthly basis but offer emotional support and encouragement, laughter, infertility education, personal experiences and let’s not forget the “can you believe what I was told?!” support. Jennifer says “The group makes me feel normal. I don’t feel like an outcast even though we all have different journeys. With it I don’t feel alone.” Amanda shared “The group gives me hope that I can make a family and makes me feel like I am not alone.” Our support group meets on the third Saturday of every month at 10 am at Sip and is looking to offer support to any woman who may feel alone.

The flier for the Fighting for Our Families Infertility Education and Fundraiser Event

The flier for the Fighting for Our Families Infertility Education and Fundraiser Event

In the state of Indiana, IVF can range in cost from $10,000 – $20,000. Medication costs can add another $3,000 – $6,000. Indiana is not required to provide infertility insurance coverage, as it is considered “elective”. Therefore, most looking to pursue infertility treatments are forced to pay out of pocket for treatments rendered. Some members from the group decided to plan the outreach/fundraiser event, Fighting for Our Families. It is scheduled for Saturday July 30th from 10 am to 2 pm at Fire Station 2, 7905 Taft St. Merrillville, IN and will have various speakers and educators as it relates to the infertility journey. There will also be vendors selling merchandise, a silent auction, activities for children, a DJ, bean bag tournament, 50/50 raffle, t-shirt sales, a bake sale, and lots of food! Jessica shares her feelings about the event saying “I am most excited about getting information out to the public. Facts. Where to find help and where to find support. I feel the State of Indiana really lacks the resources and information to help people through the rollercoaster that is the infertility process.”

When asked about the event, Brandy states “I am most excited about seeing the community as a whole come together. I mean, how incredible to see people coming together to offer support and learn information on a topic that seems so taboo.”

This year’s event will offer all funds received to be given to four couples: Brandy and Kelly Jania; Jennifer and DJ Cavenaugh; Jessica and Steve Ziller, and Amanda and Sherman Wallace. Read their personal stories below and please consider attending the event.

Kelly and Brandy JaniaThe Janias – We were married September 19, 2008 and in November 2010 we agreed we were ready to start a family. Our 5 ½ year journey has taken us to 2 OBGYN’s, 3 fertility specialists, HSG test, 9 clomid cycles, 2 unsuccessful IUI’s, Laparoscopy, 1 cyst measuring 10 inches with 2 ounces of fluid drained, 2 successful IVF’s that resulted in miscarriages, and endless blood work. Upwards of $30,000 later, we come before you with heavy hearts and empty arms but deeply hopeful for the long awaited positive pregnancy test and then a healthy and beautiful delivery of a baby of our own. We have been together for 13 years and have both devoted our professional lives to helping people; Brandy working in Social Services and Kelly working in the EMS field. We are by no means financially well off; however, the public service jobs are not fields to enter in hopes of becoming rich. After our most recent loss on March 17, 2016 we began seeing a Recurrent Miscarriage Specialist to determine next steps which appear to be a 3rd round of IVF.

DJ and Jen CavenaughThe Cavenaughs – DJ and I decided to start trying for a family in 2009. We never expected to go through all that we have and continue to do. After trying for a year we tried Clomid and got pregnant. Unfortunately, we miscarried a week later. Through an infertility specialist we went through 3 unsuccessful rounds of IUI with injectable medications. We got pregnant again naturally; this time miscarried a few days later. We have gone through 4 IVF retrievals since then with 10 embryo transfers. 2 Frozen Embryo Transfer cycles we were lucky enough to get pregnant with twins each time, sadly both of those pregnancies ended shortly after. Our last pregnancy we conceived naturally. This was the best looking one yet! Levels rose wonderfully and we were filled with so much hope. When I went for my 1st ultrasound the nurse said after a few minutes of looking, I’m sorry, there’s nothing here. I didn’t understand how that was possible. After waiting as long as we could it was determined to be ectopic, or a pregnancy of unknown location and I was given shots to end it. All this heart break but we are still Fighting for our Family!

Jessica and Steve ZillerThe Zillers– We have been on this journey for 5 years now, which has consisted of extensive testing, surgeries and procedures including blood work, hysterosalpingogram, two D & Cs, hysteroscopy, laparoscopy and sperm count tests. In November of 2015 through the recommendation of our fertility physician we attempted an unsuccessful IUI. During the testing for the IUI we learned that Jessica has a low AMH level.  A Low AMH level could mean our time is running out as her egg quantity may be very low. The current recommendation by our physician is to attempt IVF.   IVF is very expensive and without fertility coverage the last 5 years have drained us. It’s hard to sit idly by knowing that every month that passes while we save for IVF, could be bring us closer to a sad end of our journey.

Sherman and Amanda WallaceThe Wallaces – We have been trying to conceive for 5 years. In our years of trying to conceive we have seen 4 fertility specialists and undergone numerous tests. Every Doctor gives us different diagnoses which can be frustrating when trying to identify a plan. Through the various doctors it was determined that Amanda does not ovulate regularly, at one point had a blocked fallopian tube and other recently diagnosed medical conditions that make it difficult to conceive. After testing, Amanda was placed on Metformin and did rounds of Letrozole, which did assist with ovulation but left us with negative pregnancy tests. One doctor recommended IUI treatment. With all the medications, lab and procedure cost it was just not a financial option at the time. We’re hoping that with savings and some help from fundraising that we will be able to proceed with the treatment and achieve our dream of having our own little miracle.

 

 

Let’s Remember Advocacy Day Is Just the Beginning

Empowering! Exhilarating! Amazing! Awe-Inspiring! 

Elizabeth and Maria at Advocacy Day's Welcome Reception located in the Russell Senate Building.

Elizabeth and Maria at Advocacy Day’s Welcome Reception located in the Russell Senate Building.

These are just a few words that can attempt to capture the overwhelming rush of energy you feel attending an Advocacy Day.

This year though was particularly invigorating given the day’s partnership with veterans and advocating for the VA to change their anti-family-building policies that provide no IVF care to veterans (click here to find out specifics of these policies). Taking on such an issue opened many doors, both on the right and the left, highlighting to staffers, legislative aides and the representatives themselves the injustice these VA policies have on family-building for military families.

At the opening reception, we were powerfully reminded by a military family the importance of advocating for sponsorship of these veterans bills. A military spouse remarked

“War has changed their family, it shouldn’t keep them from having one.”

Upon uttering these words, you could hear the gasps of emotion from the audience. Energy was filling our lungs.

And on Wednesday May 11th, we took that energy and got to work walking the hill as we wore our orange ribbons and #IVF4Vets buttons.Twitter blew up, Facebook pages blew up, even congressional reps and aids seemed a bit surprised.

Nearly 200 infertile advocates took over the hill on May 11th, changing the conversation.

Nearly 200 infertile advocates took over the hill on May 11th, changing the anticipated conversation.

But now, we are all back home. We have returned to our day-to-day, returned to hosting our support groups, returned to our own personal struggles with infertility. The question that we now need to focus on is no longer, how will I get my representatives to support better infertility coverage? We did that. We got their attention. We even made CNN.

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Jake Tapper of CNN covers our Advocacy Day and push to get #IVF4Vets.

The question is now, how can I continue to remind my representatives that #IFAdvocacy is not just a day – it is a movement for social change, a move towards family-building, a move towards reproductive social justice. How do we do this though? How do we bottle up all of that energizing spirit and tap into it on a consistent basis?

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Elizabeth, visiting Rep. Walhberg’s (R-MI) office for the third time to ask him to support #IFAdvocacy.

Think about it as a monthly bill that you have to pay (and doesn’t yet have automatic bill payment setup). Pick a date in your calandar. Perhaps it is the 11th since we met with our reps on the 11th. Give yourself a monthly alert on this date to connect once more with your represenatives. Send out an email, send a tweet. Take those business cards you received and email their aids. On Father’s Day, remind those our representatives of how hard this day can be for those looking to build their families. On Thanksgiving and Christmas, do the same. Be an advocate all year long. This takes work.

 

 

We know that it does. But if we want #IFAdvocacy and #IVF4Vets we need to hold ourselves and our representatives accountable. In the words of Rep. Tammy Duckworth, the hill is our house. Let’s be sure to demand to our representatives that infertility coverage is something we are putting in our house.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Myth – Infertility awareness is only important for one week in April.

Last week was a big week for us, it was National Infertility Awareness Week. We believe in raising awareness about infertility year round and one of the biggest days of the year is right around the corner. What is it? Advocacy Day. It’s a day when those in the infertility community, and their friends and family, descend on Washington, D.C. and have meetings with their legislators, encouraging them to support the bills that will improve the lives of those with infertility by helping them build their families. If you’ve never done anything like that before, it might sound a bit scary. I’ll admit I was a bit nervous the first year I attended. However, that nervousness was quickly replaced with a feeling of strength and empowerment I hadn’t before felt in my infertility journey.

Maria and I attended our first Advocacy Day in 2014. It's where we met! Here we are with Maria's husband, Kevin Jordan, and one of my best friends, Sarah Powell.

Maria and I attended our first Advocacy Day in 2014. It’s where we met! Here we are with Maria’s husband, Kevin Jordan, and one of my best friends, Sarah Powell.

Advocacy Day is on May 11th this year. The deadline for registration is this Wednesday, May 4th. Have ever felt discouraged by the out of pocket expenses you’ve incurred due to your disease? Ever wished that there was more research being done about conditions like Endometriosis or PCOS that can contribute to infertility? Have you wished that there was more support for potential adoptive families? Have you thought it’s an outrage that there is a ban on IVF for veterans? If so, this is an opportunity for you to tell law makers how you feel and be a part of changing things for the better. Maria and I will be there, along with many of the individuals you’ve read stories about here. Candace Wohl, Judy Horn, Lindsey, Jennifer, Katie Lelito, Cindy Flynn, Brooke Kingston, Risa Levine, Angela Bergmann, and more. If any of these people’s stories inspired you, here’s a chance to meet them in person! I will happily introduce you!

Need more inspiration? Check out the videos below!

Please, meet us at Advocacy Day!

Elizabeth

 

 

 

#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!

Myth: You’re Alone in Your Infertility Journey

When I was first diagnosed with infertility, I felt like I was living on my own deserted island. It wasn’t that I didn’t want to tell people about how overwhelmed, sad, and lost that I was feeling. It was that I didn’t know who I could tell that would understand. I remember telling one of my good friends to which they responded, “Oh, don’t worry Maria. It will happen, you guys are young. You just have to give it time.”

I remember thinking, “No, you don’t understand. You don’t know how difficult it is for me to even get out of bed in the morning. You don’t know how upset I get when I see a pregnant woman pushing a cart in the grocery store. You don’t know how angry I get when I see a family taking a walk around my block. You just don’t know how deeply these little, everyday activities can trigger feelings of intense sadness.”

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Maria, with her husband Kevin, who have now lived most of their 5-year marriage with infertility.

For a while I didn’t think I would meet anyone who would understand how I was feeling. And so I started to isolate myself – from my family, friends, even partially from my husband. I felt that I didn’t have anything to worthy to contribute to conversations or events, so I just removed myself from them.

My feelings of wanting isolation, however, began to change when I made the decision to attend RESOLVE’s Advocacy Day in 2014. Tired of living on this so called “infertile desert island,” I convinced my husband to make the drive from Grand Rapids, MI to Washington, D.C. to maybe start doing something about my frustration and isolation rather than just complain about how I was feeling.

How one decision can change your life. Seriously.

While at Advocacy Day I began to feel like I was taking action to not just change my life but the life of thousands of other infertile men and women silently suffering with the disease, the most impactful takeaway were the friendships that I formed. Particularly, my friendship with Elizabeth Walker.

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Maria and Elizabeth in San Francisco, CA in July 2015 for the ART of Infertility.

For Elizabeth and me May 2014 was our first Advocacy Day. Both of us were representing the state of MI and so we spent most of the day together walking the halls of Congress handing out letters and asking our representatives to sponsor infertility related bills. Perhaps it was the experience of doing something totally out of your everyday that helped form such a strong bond. Or perhaps it was simply a friendship that was suppose to be. But whatever it was – Elizabeth and I both knew that we found another person who we could confide in and who simply got one another.

Since Advocacy Day in 2014, Elizabeth and I have worked together on the ART of Infertility. Traveling to numerous states, hosting art and writing workshops, dropping in at prominent fertility clinics to talk about the project, talking about infertility at academic conferences, and even mentoring young college interns about infertility. We are busy but being busy has also saved me – made me feel like I am being productive, no longer wallowing away on my infertility island.

I often think what my life would be like if I never met Elizabeth. Thinking about this, I get lost and overwhelmed. Our friendship has been integral to my healing, to my strength and to my commitment to always advocate on the behalf of those who are infertile. She has become not just my infertile sister, she’s simply Liz – my big sis.

And so while there are a million different reasons to consider attending Advocacy Day this year on May 11th, one of the most powerful reasons to attend is because it could quite literally change your life through the friendships you may form. If I never met Elizabeth that May 2014 during Advocacy Day, my life would not be what it is today. So, I encourage you all – if you are feeling alone, in despair, frustrated and ready to make a change – come to Advocacy Day where you will be greeted by hundreds of other infertile women and men who understand exactly how you are feeling. You will be amazed.

Advocacy Day isn’t just about coming together to advocate for infertility rights, it is also about coming together as a group that has been told their stories shouldn’t be told, their stories don’t count enough to be considered for legislative action. It is a coming together as a force of women and men who have become friends from across the U.S. to change how we think, talk, and support issues of infertility. Advocacy Day is powerful as it is a pure embodied display of how the coming together of friendships can make change.

Join us!

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Maria and Elizabeth outside the Capital Building during Advocacy Day 2015.

Reflections on Advocacy Day from Infertility Professional, and Patient, Lindsey

Bringing you another personal story by way of my interviews in Columbus a few weeks ago. Lindsey, who is both an infertility patient, and a health care professional in the field, shares why advocacy is important to her. Thanks, Lindsey, for sharing your story!

Elizabeth

“I practice as an OB/GYN Nurse Practitioner and specialize in infertility. I was an RN and worked in the cardiac ICU and then case management so nothing women’s health related. Then, my husband and I got married and started trying to get pregnant. We had a lot of trouble. I felt like the nurses and other people I encountered along the way as a patient had a complete lack of knowledge of what to do with me. It’s a specialty field so I feel like it’s not necessarily the nurses’ fault. I just think, in general, it’s an area that people don’t know anything about unless they work in it. Physicians don’t necessarily do as much or know as much as they should before you end up getting to a specialist. I feel like there’s a lot of wasted time. I decided to go to grad school so I could help other people.”

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Lindsey at work in her Columbus, Ohio OB/GYN office.

“I want to share my story because infertility is just not talked about enough. People don’t know enough about it, or realize that it impacts so many people. It won’t be such a taboo topic if it’s something that people are actually aware of. It’s been so hushed and so unspoken that people don’t know enough about it to care enough about it.”

“The first year I went to Advocacy Day, RESOLVE: The National Infertility Association, really wanted to get professionals there because they think that the senators and representatives take well to professionals who see infertility on large scales. I find it extremely frustrating that legislators, and people in general, don’t fight for coverage for IVF and insurance for those with infertility. Working in the field, we pay for type 2 diabetes in people who have poor lifestyle choices, we pay for lung cancer in people who have smoked. We cover all of these diseases that are, not always but many times, preventable. Infertility typically is not, yet there’s no coverage for it. It’s such a disparity in medicine that we don’t treat a disease like infertility. That’s something I push at Advocacy Day. We cover preventable disease, we cover self inflicted disease, and we don’t cover this.”

“If people are nervous about going to Advocacy Day, I think that once they go, they’ll want to go back because it’s empowering. They’ll feel like they’re making a difference then they won’t question it again.”

– Lindsey

Please consider joining ART of IF and Lindsey in Washington, D.C. for Advocacy Day on May 11th. 

 

 

 

 

Reflections from Advocate Katie Lelito on Managing your Infertility Identity

By Danielle Bucco

DSC_9969Those who are dealing with infertility understand how difficult it can be to decide who they are going to tell. Many want to maintain a level of privacy and only let certain friends and family members in on the news. Others, however, are more vocal about who they tell and explain it to coworkers, distant relatives, or neighbors. It is up to the individuals and couples themselves about what feels right for them and what would be the best decision for their family. Some also choose a third option like Katie Lelito. Katie is able to maintain two different identities, an online identity and a professional identity.

Katie is someone who is really passionate about advocating for infertility and did some great work at the University of Michigan (U-M) when she was a student there. She is very vocal online and in support groups about her story with infertility, however, none of her coworkers knew anything about her struggle to conceive at the time. She specifically wanted to maintain these two different identities because she found it can be much easier to be open online with a stranger as opposed to face to face. Katie only recently decided to break her anonymity by using her name for a few advocacy projects that she has been working on.

One of the ways Katie is active on the issue of infertility is to try and get employers to cover fertility treatments. She petitioned the University of Michigan to change their coverage policies and she was successful. University of Michigan gave all staff and students with grad care $20,000 max lifetime coverage for in vitro fertilization plus $10,000 drug coverage. This was an extremely important step in getting more employers to cover fertility treatments. She was also fortunate enough to bring this issue up with her own employer and was again, rewarded for her effort and passion with another success.

EHW_4856            Katie’s success at U-M was a big turning point for this issue. Many people in the university setting are passionate about many issues, one of them being infertility and how it is viewed in the workplace. Universities are also important because it is a good way to start change. Many people look to them to take the first steps towards certain issues and fertility coverage is no different.

Moving forward, Katie hopes to continue to be an advocate for infertility. She encourages people who want to ask their employers for coverage to talk to her or to read a list of 13 ways to help approach the topic with employers. Approaching an employer about such an important and personal topic can be terrifying but if employers start to accept these coverage ideas, it could help change people’s lives forever. This is only one of the areas that Katie is interested in but she has helped to make a difference in workplaces and is an inspiration to others looking to do the same. You can also learn more from an interview Katie did with Beat Infertility by listening to it here.

Myth – One round of IVF is all it takes to “beat” infertility. 

I was very reluctant to try IVF. Three and a half years into trying to conceive I had endured 5 rounds of Clomid and timed intercourse, 4 IUI hybrid cycles, a diagnostic laparoscopy, and six months of weekly therapy appointments to sort out how I felt about the prospect of using IVF to try to build my family. I had spent months doing research about the procedure, along with even more extensive research about adoption. After much consideration, my husband and I figured that IVF would be the cheapest, fastest, easiest path to parenthood, even though it isn’t any of those things. Assuming it worked.

One in eight couples in America have received a diagnosis of the disease of infertility. Like most Americans needing IVF, our health insurance wouldn’t cover the treatment. We’d have to pay out of pocket. Not only that, the emotional investment can be extremely expensive. We decided that, for us, the best plan would be to try one round of IVF, transfer any resulting embryos, and move on to other options.

I remember when I told my mother-in-law we had decided to give it a try. I was in the dollar aisle of a grocery store talking to her on my cell phone. “That’s good,” she replied. “We know IVF works.” However, while I appreciated her confidence and hoped that it WOULD work for us, I’d done the research and had insight that she didn’t have. Although IVF would give us the best odds we’d ever had of achieving a pregnancy, they were still against us. IVF working was definitely not a sure thing.

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Crib with Medication Boxes by Elizabeth Walker. Mixed media with custom crib by Morgan Shores Woodworking.

As described in this December article from The New York Times, a study out of the University of Bristol and the University of Glasgow in the United Kingdom found that “nearly two-thirds of women undergoing I.V.F. will have a child by the sixth attempt, suggesting that persistence can pay off.”  The out of pocket costs for those cycles? As explained in this article about the same study, published by the Los Angeles Times, “a rough calculation (assuming two attempts at embryo transfer per cycle) would cost up to $132,000”.

These are the remnants of approximately $10,000 worth of medications, needles and syringes I used while undergoing one IVF and two subsequent Frozen Embryo Transfers. What could have resulted in my child, or children, instead resulted in a pile of boxes, bottles and sharps containers that I find hard to discard because they help represent my treatment journey.

These are the remnants of approximately $10,000 worth of medications, needles and syringes I used while undergoing one IVF and two subsequent Frozen Embryo Transfers. What could have resulted in my child, or children, instead resulted in a pile of boxes, bottles and sharps containers that I find hard to discard because they help represent my treatment journey.

THIS is why it’s so important that we advocate for legislation that will help those with infertility build their families. Maria and I will be at Advocacy Day in Washington, D.C. on May 11th, fighting for this cause and we invite you to join us! It’s an amazing, empowering experience, and a place where incredible friendships are made. In fact, Maria and I met at Advocacy Day in 2014.

If you want to learn more, check out this link from RESOLVE: The National Infertility Association. Or feel free to contact us to chat about it at info@artofinfertility.org. If you can’t make the trip, check out this link to learn more about the federal legislation and for easy ways to contact your Senators and Members of Congress to show your support. Another easy way to make a difference is sharing messages about Advocacy Day on social media. You could share this video, for example. Together, we can raise awareness, busting the myth that one IVF treatment is all it takes, and working to improve the treatment coverage that will help those with infertility build their families.

Elizabeth

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Risa Levine – An Advocacy Success Story

This week, we’re sharing the story of infertility advocate, Risa Levine. Risa’s story is a great example of the work that can be done and the progress that can be made, when you’re willing to stand up and fight for a cause. We hope that it will inspire you, as it has us, and that you might decide to join us at Advocacy Day on May 11th in Washington, D.C.

Elizabeth

Risa’s Levine’s husband proposed to her with the words, “I want you as my wife, I want you as the mother of my children.” They married shortly after and, with Risa living in New York City and her husband in Washington, D.C., they had a commuter marriage for the first year. They both wanted children but Risa stayed on the pill, knowing that trying to conceive wouldn’t bode well for what was already a challenging relationship.

Eventually, Risa’s husband joined her in New York City and a few months into trying to conceive, she made an appointment with a reproductive endocrinologist. Her doctor was confident that a few IUIs was all she would need. Unfortunately, that wasn’t the case. IVF cycle after IVF cycle ensued. “I did my injections at the U.S. Open in the bathroom, I did them in the middle of a Springsteen concert concert, I did my trigger shot with a client in the car. I just pulled down my pants and just popped it in my butt. You name it, I did it everywhere,” Risa recalls.

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On the first morning of the 2004 Democratic National Convention, Risa, who was involved in John Kerry’s campaign for presidency, had her blood drawn for the beta results of her first IUI before driving to Boston for the convention. “I got the phone call just as I crossed the Massachusetts border. I heard the magic words, ‘Congratulations, you’re pregnant!’”

Elated, Risa threw back the top of her convertible and blasted Bruce Springsteen for the rest of the trip. Sadly, her repeat beta two days later revealed her numbers were going down instead of up. She was losing the pregnancy. Just wanting to be at home, she left the convention before Kerry and Edwards gave their speeches.

Early on in treatment, Risa started advocating for infertility rights on her own. “I had a lifetime max on my insurance of $10,000. I can’t speak for the rest of the country, but in New York that lasted about 15 minutes. I mean, a hysterosalpingogram and then three consults and you’re dead,” she explains.

Risa went to Washington, D.C. prepared with homemade folders and information packets on infertility. She’d set up a meeting with Anthony Weiner, who had previously introduced the Family Building Act, legislation to mandate infertility coverage on a federal basis. It hadn’t gotten very far and Weiner wasn’t planning on introducing it again. “I said you’ve got to introduce it again. I was aggressive and pretty vocal,” Risa recalls. With her urging, Weiner reintroduced the legislation six months later. “As far as I’m concerned, Risa states, “Anthony Weiner is an infertility hero and I will maintain that to this day.”

Weiner’s office alerted RESOLVE: The National Infertility Association, that Risa was on Capitol Hill lobbying for their issues. RESOLVE’s president, Barb Collura, called Risa and asked her to join their advocacy efforts. So, Risa chaired her first Advocacy Day and continued working with RESOLVE while doing everything in her power to try to get pregnant. She tried acupuncture, Mayan abdominal massages, went to a physical therapist to manipulate her uterus. She traveled to Israel with her family and visited every rabbinic tomb in northern Israel, traveling by armored bus to Bethlehem and, wearing a red bracelet, prayed at the tomb of Rachel, who had also suffered from infertility. She even drank crushed red rubies because there’s a connection between rubies and fertility in the Talmud. She had more pregnancies but none of them lasted. It was a difficult time, made even more challenging with Risa’s husband struggling with depression and alcoholism. “My husband continued with the alcohol binges in and out of my cycles so I was either dealing with him in the hospital or me losing a pregnancy or both. It was just an up and down nightmare of both happening at the same time.”

Back in the U.S., Risa worked with then Senator Hillary Clinton’s office on infertility. “We went through every issue and they were extremely patient, very inquisitive, and they wanted to understand absolutely everything,” she recalls. While Clinton’s office didn’t think it was the right time to introduce the Family Building Act in the Senate, they promised to help. “I didn’t know what form that was going to take but I also know how Clinton operated and her methodology is that if she couldn’t do it legislatively, she always found another way.”

A few months later, RESOLVE received a phone call from the Centers for Disease Control (CDC) after Clinton had called them asking what they were doing about infertility. As a result, the CDC drafted a white paper, establishing a need to study infertility. That paper became the National Public Health Action Plan for the Detection, Prevention, and Management of Infertility. “When the CDC declares something a disease that requires study, it becomes a public health issue and that’s an enormous platform for our advocacy,” explains Risa.

In November of 2007, Risa was mid way through what would turn out to be her last frozen embryo cycle when her husband came home saying he thought there was going to be trouble at work and that she had to either cancel the cycle or he was divorcing her. “It was out of the blue and that was really super traumatic,” she recalls. “He canceled the cycle, then left shortly thereafter for in-patient rehab. I had a friend’s wedding and I couldn’t face it and I went to Iowa instead for Hillary because that’s what I do. That’s how I deal with things. I campaigned. It became about getting Hillary elected” Risa says, fighting back tears.

A couple of weeks passed and things at home seemed like they would be okay until her husband told her he had rented an apartment and would be moving out the following week. Risa expected that their divorce would be amicable but that wasn’t the case. Instead, it took the next two years. The main thing they fought about was the four embryos they still had in storage at Cornell. “My then father in law was adamant that I was not going to have those and he told his lawyer, who told my lawyer, that there was no amount of money that he wasn’t willing to spend to make sure that I didn’t have them.”

Knowing that she couldn’t afford to fight her father in law, Risa made the decision to donate the embryos to Cornell for research, believing that was the only way to make sense of losing them.  She hoped that Cornell would be able to use the embryos for something meaningful, whether it was stem cell research, infertility research, or whatever else they chose to use them for. Risa recalls that she had to force herself to sign the consent to dispose of the embryos and that that’s when she broke down. “I’ll never see my children. I lost my kids. The hopes and dreams I had; celebrating their bar mitzvahs and college graduations and first days of school and all of that. There is no getting over that. There’s living with it but there’s no getting over it.”

Risa spent her life’s savings and then some on her treatment, “I don’t have a baby and I’m divorced. So, outcome wise. It’s not an effective use of funds, time, body, money, life in any way. By the time my divorce was final in 2010 I was 48 years old and I was broke and broken.”

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Risa continues as an infertility advocate because she hopes that she can make sense of what happened to her by helping other people. She’s frustrated when she sees those in the infertility community build their families and then not turn around and try to help those who are still fighting to build theirs by writing a $10 check to RESOLVE once a year, writing a letter to their legislators, or showing up on Capitol Hill during Advocacy Day.

Risa hopes that through her advocacy work, eventually, nobody will have to go through what she went through. Her next fight will be at the first New York Advocacy Day, Tuesday April 12th in Albany for coverage of IVF and legalized compensated surrogacy and she will be in D.C. again on May 11th, lobbying for family building legislation. “I fight so that people can have success,” she says. “I want them to have success.”