Persistence in the Age of Resistance

Today, May 18, is Infertility Advocacy Day. This year, RESOLVE: The National Infertility Association, is teaming up with the American Society for Reproductive Medicine. Nearly 250 constituents have gathered from around the country to fight for improvements for those living with infertility. Long-time advocate, Risa Levine, is among them and shares this message with us as today’s guest blogger.

To my fellow advocates,

We are at a strange place in our history for women of our generation.  After the dormancy of the post Viet Nam war era, we are finally seeing a reawakening of political consciousness, a resurgence of social activism in an era when most public engagement has been reserved for Super Bowl ticker tape parades. We are seeing people take to the streets outside government offices, we are seeing hundreds of thousands of women marching all over the country. And we are seeing crumbs of response. Bill O’Reilly is history. That’s something.

Most of us don’t remember the sixties, a time of anti war protests, suspicion of government, overthrowing of a well established social order. A time when “burn your bra” was not just a symbol or catchphrase, but a revolutionary, engaged act of actual resistance to social norms that far eclipsed the message attempted to be sent by wearing knitted pink pussy caps.

But for the most part, the resistance agenda has been reactionary, one of anger, fiery Roman candles in the night. An affirmative legislative agenda has not quite yet been identified and the methodology has been murky. This era of #resistance was triggered by one man, and the mistreatment of one woman. But there are myriad inequities that have been brewing for a long time. Occupy Wall Street reflected those divisions but failed to achieve meaningful change beyond sloganeering. Similarly, the signs at all of the recent marches range from reproductive rights to immigration to LGBT rights to guns – while all require respect for people, the only proposed solution, dump trump, doesn’t address the underlying problems.   “Resistance” alone, is not solutions-based.

Risa wth Gloria Steinem, her first role model, getting out the vote in PA

Anger – when properly directed – is good. Anger can be motivating. Anger can spur people to turn off the TV and take to the streets. But that “fight or flight” adrenaline response to anger without proper outlets, a cogent agenda and a clear end goal, can become unhealthy. And unrequited. The problem with resistance, like the mantra of the 60s, “never trust anyone over the age of 30,” is that it will, by definition, fail, as the aging process is scientific fact.

While our efforts to address the fundamental unfairness that is experienced by infertility patients should be – and because of some of our advocates’ efforts sometimes is – an issue for #resistance, it is more an exercise in Persistence. A diagnosis of infertility IS a pre-existing condition that could bar one from obtaining health insurance if the House legislation were to pass the Senate, but even the most liberal outlets neglect to include infertility on their comprehensive list of diseases that would bar infertility patients from coverage: we have much work to do to educate even our natural allies. Let’s not forget that.

However, when we hit Capitol Hill, we aren’t coming only from a place of adrenaline-producing anger. Anger at the unfairness, sure. But we aren’t acting merely in opposition to the current zeitgeist. We aren’t seeking confrontation. And we aren’t simply fighting a misogynist agenda. We are promoting education, family values, long term protection and science.  We are seeking to right a wrong practiced by both parties for decades. We are in it for the long game.  We are fighting for families. For traditional values reinforced by modern scientific advances. Love and Science, hand in hand. We must be above partisanship. We are above the divisions in this country. We personify Persistence.

Risa with Hillary Clinton in New York City: Discussing Matters of State.

Whatever your personal feelings about where we are at this very, very historical juncture, on May 18, stay focused on the positive. We are advocating FOR something. For more rights for ourselves and for our families. For future families.  For our military. For the safety and integrity of our bodies. We come in peace – we simply need to know that our health concerns are being addressed. We do and we will exercise our voting rights if we aren’t heard, but we come as constituents with problems that Congress can address. Ask them for their support. But don’t leave without their understanding.

 

 

Gearing Up for Advocacy Day – Andrena’s Story

Thanks so much to all of you who applied for our The ART of Infertility Advocacy Day grant! We wish we had the funds to help everyone who applied. The staff at RESOLVE: The National Infertility Association, was kind to choose the recipient and chose Andrena King who will be representing the state of South Carolina! In today’s post, we hear a bit about Andrena’s infertility journey and what she’s been doing to advocate for change. Thanks, Andrena, for sharing your story!
-Elizabeth

My husband Chris and I were married October 2013 and we decided to try to conceive two years ago. After actively trying for a year we started the process of getting basic tests done to make sure everything was working fine. One of the initial tests showed that I had a blocked fallopian tube so I was immediately referred to a fertility doctor by my gynecologist. Everything was happening so fast that initially I felt numb. I held my tears in until I went back to work and had a major breakdown in my supervisor’s office. I was heartbroken and afraid. 

We had a terrible experience at our first consultation. It was like we were on an assembly line. We were rushed in and tossed to people we were meeting for the first time who seemed more concerned about signing us up for the next group of couples getting IVF. My husband and I were devastated and no one cared. So, we took matters into our own hands and started doing research. We started our search for other fertility specialists in the area and reached out to friends who had overcome infertility for guidance. I found the RESOLVE: The National Infertility Association website and was blown away by resources available there.

While reviewing our health plans, we realized that our benefits included the opportunity to receive a virtual second opinion online. We had our tests and charts reviewed by a fertility specialist. While he couldn’t confirm that my fallopian tube was actually blocked, he did rule out male factor infertility. We found another fertility doctor that was a great fit for us. Our new doctor was recommended by mutual friends. As we talked during our first appointment, we knew we were in the right hands by his compassion and his ability to explain options. He advised that the next step was to have a laparoscopy done to see what was actually going on.

During the surgery, it was discovered that one of my fallopian tubes was severely damaged and had to be removed. The damage was due to a previous surgery I had to have a cyst removed while I was in college. My left fallopian tube was blocked by a cyst so that was also removed.  We felt optimistic after gaining answers from the laparoscopy and decided to move forward by taking fertility medication and trying on our own for two months. The third month, we had our first IUI which wasn’t successful. Month four brought another unsuccessful IUI.

Based on what the doctors said, it was the perfect opportunity for us to conceive because everything was in place. We were very disappointed and decided that mentally, emotionally and physically we needed a break. We are currently taking a break from treatments and have become very involved in raising infertility awareness in our community.

While busy with treatments and doctor appointments, I recognize the limited access to resources and support in my city related to infertility. After seeing the guidelines needed to start a support group, my cousin and I decided to start a RESOLVE Peer Led Support Group in Columbia, SC. Our first meeting was held in August of 2016. The group is one of two in the entire state of South Carolina. When our journey started, Chris and I quickly realized that our insurance plans would not pay for any of our doctor bills or treatments. This set back and financial burden prompted us to advocate to change this injustice, not only for ourselves but for others in our state. After months of meeting with legislators, the S.10 Legislation was pre-filed in December of 2016. The bill requests that insurance companies cover the diagnosis and treatment of infertility procedures. The legislation has some exclusions but this is a big step in the right direction. The legislation is currently in subcommittee waiting to be discussed by the Senate and House. We have great support from our family, friends, co-workers and non-profit organization WREN (Women’s Rights Empowerment Network) advocating with us to get this legislation passed.

I applied for the Advocacy Day grant to bring awareness to the lack of insurance coverage, legislation and support in my state for families trying to conceive. This has to change. I’m looking forward to learning how to properly interact with legislators to advocate for others on their journey to parenthood as well as collaborating with others who as passionate as I am about making a difference in our states. I hope to gain new friendships, guidance and be empowered to continue to advocate for others.

Chris and I remain positive that we will one day become parents as we rely heavily on our faith in God, prayers and support from loved ones.

Apply for Grant to Join ART of Infertility at Advocacy Day

In May, we’re heading to Advocacy Day for our fourth year. We know that there are many in the infertility community who would also like to attend, but find it difficult when they are already paying out of pocket to try to build their families.

So, this year, we’re offering a grant to allow a first-time attendee from an under-represented state to make the trip to attend this event, hosted by RESOLVE: The National Infertility Association.

You can get all the details below. We hope that those of you eligible will apply, and that everyone will share the word with their online and in real life support groups, their clinics, families, and friends.

Details:

  • The grant will cover airfare and ground transportation, lodging, and a stipend for meals.
  • All eligible entries will be considered and staff from RESOLVE: The National Infertility Association will choose the awardee.
  • All information must be submitted by Tuesday, April 4th at 11:59pm EST and the grant recipient will be notified on, or before, April 12th.

Eligibility Requirements:

  • To be eligible, you must live in one of the following locations: Alabama, Arkansas, Georgia, Idaho, Indiana, Iowa, Kansas, Louisiana, Maine,  Mississippi, Montana, Nebraska, Nevada, New Hampshire, New Mexico, North Carolina, North Dakota, Oklahoma, Oregon, Rhode Island, South Carolina, South Dakota, Vermont, West Virginia, Wisconsin, Wyoming.
  • You must also be able to travel to Washington, D.C. on May 16th, 2017 and stay through the evening of May 18th, 2017.
  • Eligibility requires participation in all Advocacy Day activities, including physical assistance with a pop-up exhibit featuring Advocacy Day stories and artwork that will be curated by The ART of Infertility and on display during the welcome reception on Wednesday May 17th.

To Enter:

Please fill out the following form: http://bit.ly/ADGrant_2017

About The ART of Infertility:

In March 2014, the first exhibit “The ART of IF: Navigating the Journey of Infertility” debuted at the Ella Sharp Museum in Jackson, MI. Elizabeth Walker curated this exhibit which emerged from her own experiences with infertility. In an effort to make sense of her infertility diagnosis and surround herself with people who understood the difficulties of navigating infertility, she joined an infertility support group and realized the importance of sharing her journey with infertility. She also began creating artwork representing infertility and with others in her infertility support group collected artwork and stories for the Ella Sharp exhibit. Shortly after its exhibition, Maria Novotny met Elizabeth at Advocacy Day, an annual event hosted by RESOLVE: The National Infertility Association, which lobbies Congress on access to care and other issues important to the infertility community. Both being from the state of Michigan, Elizabeth and Maria spent the day lobbying MI congressional representatives.

Spending time together, we shared how infertility was shaping not just our personal lives but professional ones as well. Maria explained that she was studying “rhetorics of infertility” as part of her PhD at Michigan State University. Elizabeth described how she was trying to bring the exhibit to other cities and collect more stories and artwork from around the country. We both shared a desire to become more involved in the infertility community and less concerned with becoming pregnant ourselves. We shared how we were finding our own healing in creative outlets and connecting with other infertile women and men. After the advocacy event, Maria sent Elizabeth some short non-fiction vignettes detailing the everyday struggles of being young, recently married and diagnosed with infertility. In turn, Elizabeth shared mixed media art pieces representing the pain, frustration and isolation of experiencing failed fertility treatments. Through this sharing, we both noted how central creativity was to our healing and, so, we decided to collaborate. Through this collaboration, we developed “The ART of Infertility” the national art, oral history and portraiture traveling exhibit.

Why Advocacy Day:

Advocacy Day holds a special place for The ART of Infertility. It is where Elizabeth and Maria first met and where the project really began to grow. Advocacy Day serves as a reminder of why we travel the world curating exhibits and raising infertility awareness. As two infertile women, however, we understand that affording Advocacy Day can be a challenge. This grant is aimed to provide support for an infertile person who would like to attend but could otherwise not afford to come. It is our hope to inspire another infertile person by granting them the opportunity to join hundreds of passionate women and men fighting for infertility justice.

Click here to learn more about Advocacy Day.

Questions can be directed to: info@artofinfertilty.org

 

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.”

DSC_4767 - 4x6

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.