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

 

 

 

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. 

 

 

 

 

Going the Distance for Infertility Coverage – Reflections on Advocacy Day from Brooke

Today, Brooke Kingston shares why she travels 2000 miles from home to Washington, D.C. for Advocacy Day each year. Thanks, Brooke, for sharing your story!

Elizabeth

Brooke-in-DC-2015

Brooke after sharing a portion of her story with ART of Infertility during our mini interview sessions before Advocacy Day, 2015.

Two years ago this May, I boarded a plane in Phoenix, Arizona destined for Dulles International Airport in Virginia, a place I’d never been. I picked up my rental car and drove to a home in Sterling, where I would be staying for the next week. I was about to meet someone I’d been online friends with for 3 years, but had never met face to face. Our plans were to get pedicures, eat good food, and spend a day in Washington, D.C. talking to members of Congress.

You’re thinking I’m crazy, right? Maybe a little.

When I think back to the leap of faith I took flying across the country, meeting (and planning to stay with) someone I’d never met and committing to walk the halls of the Capitol, I’m still a bit surprised with myself. I’m a homebody. I hate public speaking. Why would I do something like this? To explain that, I need to back up a little more.

Five years ago this summer, my husband and I were diagnosed with joint fertility issues. We were given a 2% chance of ever conceiving on our own. Having agreed ahead of time that we wouldn’t do IVF, we spent the next year coming to the decision that we would choose a childfree lifestyle as our resolution to infertility. It was the hardest choice we’ll ever make as a married couple, but we made it together and committed ourselves to each other and began to heal.

Part of my healing process is creating. I took up new crafts and converted what would have been the nursery into an office and craft room. I learned to knit and returned to painting, something I’d enjoyed in high school. I baked and decorated cookies and cakes. I dabbled in photography and sewing. My Pinterest boards grew exponentially. When our first nephew was born in the summer of 2014, I learned to quilt and made 7 quilts in as many months, gifting them with love to friends and family. I poured myself in creating to fill the void.

The fifth quilt Brooke created.

The fifth quilt Brooke created.

The other part of my healing process is taking action. Infertility left me feeling helpless, and then angry at that feeling of powerlessness. To face that anger, as well as to find community and support, I became involved with RESOLVE: The National Infertility Association. I started as a support group attendee shortly after our diagnosis and eventually became a group leader. I became involved in fundraising through the Arizona Walk of Hope, and eventually became the chair of the event. Later, I would become an Ambassador and assume the responsibility of being a positive face of RESOLVE in the community.

Brooke with fellow Advocacy Day attendees at the welcome reception in 2015.

Brooke with fellow Advocacy Day attendees at the welcome reception in 2015.

In the midst of this volunteer work, I heard about Advocacy Day. In 2013, I remember posting on Facebook that I would be there in 2014. I didn’t know what all was involved, but that was my goal, and I would not fail. Those were my words: “I will not fail.” I spent the next year saving for airfare. A friend who I’d met through infertility message boards and become close with – thanks to our spectacularly matched wit and diagnoses – offered her home as my place to stay and agreed to join me at the Capitol. I was beyond excited and nervous, but on May 7th, 2014, the day of my first Advocacy Day, I achieved the goal I’d made over a year earlier.

Brooke at Senator McCain's office during Advocacy Day 2014.

Brooke at Senator McCain’s office during Advocacy Day 2014.

It’s hard to describe the exact feeling of being at Advocacy Day. It’s awe-inspiring: from meeting the staff of RESOLVE, to hearing the empowering speeches of the event chairs at the morning training, to being in the Capitol building amidst the hustle and bustle of staffers and trams and security points. It’s intimidating sitting in front of a congressional staffer (most of whom were younger than me – you kind of want to ask if their parents know where they are), telling them you’re there because you’re infertile and you want their boss to support legislation that will make life better for people like you. It can be difficult to remember all the statements you carefully rehearsed and the facts about the bills you memorized when you’re nervous and your mouth feels dry and your palms are sweaty. Their political philosophy may be wildly different and you may feel like you’re talking to a wall.

But your voice is HEARD.

Whether my congressperson agrees with me or not, my voice was heard, and it was heard on behalf of 7.3 million Americans who weren’t there in that room that day. That’s an incredible sense of accomplishment. Even if they don’t agree to co-sponsor a bill, when we tell them that we’re there with a group of over 150 people from all over the country, that makes an impact. That tells them that we are a force, and that we matter. That’s the incredible feeling that drives me to attend Advocacy Day, to set aside my fear of public speaking for the greater good of my community. This May will be my third consecutive year attending, and I have no plans to quit.

Brooke and her online turned in-real-life friend, getting pedicures before Advocacy Day 2015.

Brooke and her online turned in-real-life friend getting pedicures before Advocacy Day 2015.

As for the friend I stayed with that first year, I’m doing that again, too. We’ve become the best of friends, and this is something we’re committed to doing together, along with the growing number of advocates we meet each year. Advocacy isn’t only about the message we deliver directly to congress. It’s about our community and how we foster it and make the environment better for those who can’t speak out. It’s about being with other people who understand the emotional complexity of the disease and using those emotions to drive action.

It’s about taking a leap of faith and believing that you can create a difference, start a conversation, and make things better for others.

Please consider joining Brooke at Advocacy Day in Washington, D.C. on May 11 this year. You can learn about how to get involved at resolve.org.