While we were in Washington, D.C. for RESOLVE: The National Infertility Association’s Advocacy Day and for our pop-up gallery and workshops at Busboys and Poets a couple of weeks ago, we asked those in attendance to fill out cards describing what “infertility is” to them. You’ll see some of them throughout this post, from Elizabeth. You can see more by viewing a slideshow at this link.
When I think of infertility, I think of many things. How I view infertility and what it means to me has changed as I’ve traveled through my journey.
Infertility is… devastating.
Infertility is…feeling left behind.
Infertility is…an identity crisis.
I was pregnant once, as a result of a frozen embryo transfer, and only knew I was pregnant for a few days before learning that the pregnancy was ending in an early miscarriage. During those few days, I was excited, hopeful and cautiously optimistic, that after four years of timed intercourse, hormone injections, and 7 a.m. ultrasound appointments, I might finally become a parent. However, I was also experiencing some serious anxiety and a complete identity crisis.
The early years of infertility were extremely difficult. However, once I was used to the fact that I had an infertility diagnosis (for the most part anyway), I settled in to my place as an infertile woman and RESOLVE: The National Infertility Association peer-led support group host. I read books on infertility, I knew which foods to eat to boost my egg quality (and incorporated excessive quantities of them into my diet), I had infertile friends, and was beginning to perfect my answers to the question, “Do you have kids?”, recite them with conviction, and be ready for any follow up questions that came my way.
When I found out I was pregnant, though obviously happy, I was also confused about where I would fit in. What would happen to my relationships with my infertile friends who I would leave behind? What would my role within RESOLVE become? The first ART of Infertility exhibit was on the schedule at the Ella Sharp Museum in Jackson and I remember being a bit upset that I had to stay in the world of infertility to work on it, instead of being able to enjoy my pregnancy. I was terrified of moving into the world of someone who was pregnant after infertility. I was even feeling exhausted about the fact that, after watching my diet for years to GET pregnant, I’d need to watch my diet for another 9 months in order to make sure my baby was getting the nutrition it would need. It was a mix of thoughts and emotions. A complete identity crisis, over the course of less than 72 hours.
I wish I would have gotten the chance to figure out how I would incorporate all of the thoughts and fears above into my new identity as a woman who was parenting after infertility. I haven’t gotten there yet and might even eventually choose to live child free. I’m still trying to navigate figuring out my identity a bit. However, through working on the ART of Infertility, I feel like I am really finding my footing. Because of this project, my view is now that
Infertility is…meeting amazing people, around the country and around the world, who understand how the disease impacts my life, because they’re living it too.
Infertility is…educating health care professionals about how they can better serve their patients.
Infertility is…hosting art and writing workshops to give others the creative outlet that I have found so helpful along the way.
Infertility is…visiting amazing cities and sharing the infertility stories of those who live there.
Please share with us what “Infertility is” to you.
These past two weeks been a whirlwind! New exhibit and workshop dates are currently being planned for the project, we hosted our workshop and exhibit at Busboys & Poets in DC, we met with our MI legislators to discuss infertility legislation, we gathered new infertility stories for the project, plus we successfully met our Kickstarter goal! Thank you for all who supported us, both financially and those who continue to publicly support and share information about the project. Liz and I continue to pinch ourselves in amazement about how the project has evolved over this past year.
Many of you may not know that Liz and I first met during this time last year at RESOLVE: The National Infertility Association’s Advocacy Day. We bonded over our infertility stories, experiences leading RESOLVE peer-led support groups, and our passion and interest in the arts as a heuristic for infertility healing. Our friendship has blossomed over the past year, incorporating many of these shared interests and our professional backgrounds into the project.
Liz and me in front of the Capitol during Advocacy Day last week.
So while I reflect on our time spent in DC last week, I think about how Advocacy Day brought the two of us together and really helped to shape the project into a national infertility oral history and art exhibit. This year, Advocacy Day continues to serve as a fruitful day connecting hundreds of infertile women and men. Liz and I were lucky enough to spend time with a few of these individuals by inviting a few women to participate in a “mini” interview session for the project.
Here we met Jo and Brooke. Two empowering, positive, strong, and courageous women. Talking with them and learning about their artifacts (Jo, a tatoo; Brooke, a quilt) that they choose to share with the project, I was struck in the moment of interviewing each of them that this is why I come to Advocacy Day. This is why I tell my story to Congress. This is why I believe that infertility should become recognized as a national public health issue. These women. Sitting before me. Telling me their stories. They inspire me and remind me that I’m not alone. That our infertility stories matter. That together as an infertile community, we are strong, we are powerful, we can change the cultural stigmas that are attached to infertility. I want to thank Jo and Brooke for agreeing to share their stories (shown below). I hope that others will find them equally inspiring and empowering.
Elizabeth:
I’m in awe every time I sit down to interview an individual or family about their experience with infertility. Since starting the project, I’ve completed around 70 interviews and they never fail to remind me of the passion and desire that those with infertility have for building their (our) families and what they are willing to do to make that happen, whether they end up parenting, or choosing to be a family of two and live child free.
Sadly, because of the lack of the acknowledgment of infertility as a public health concern (even though it is recognized as such by the Centers for Disease Control and Prevention), and insurance coverage for this disease; many endure years of treatment, and pay for most, if not all of it, out of pocket. That’s why I choose to advocate for legislation that will help those with infertility build their families.
An important part of that is sharing my story, and, through the ART of IF, I’ve had the honor and privilege of documenting and sharing the stories of others as well. It’s been an important part of being able to process my feelings about my disease and I find it amazing that I’m able to help others do that too. During our time in D.C., Maria and I were able to sit down with seven amazing women, Tomiko, Brooke, Angela, Katie, Jo, Annie, and Renee, and hear a bit of their stories. Thank you all for letting us in to your lives and journeys!
Renee, Annie, Elizabeth, Maria, and Jo at the wrap up reception during Advocacy Day.
Meeting with my state and local representatives at Advocacy Day made me realize what an incredible tool the project could be for sharing the importance of the issues we were presenting (you can find a list of those issues and bills at RESOLVE: The National Infertility Association’s website by clicking here) and I’m excited about ways we can do outreach through the project to help make a difference on both a state and federal level.
Brooke:
Infertility Advocate, Brooke Kingston, in Washington, D.C. for RESOLVE:The National Infertility Association’s Advocacy Day.
Brooke tells us why she wanted to participate in the ART of Infertility project.
Brooke shares reflections on her infertility diagnosis and decision to live child free.
Brooke finds a creative outlet for her infertility through a variety of hobbies. Here, she holds a quilt she created.
“My husband and I are five years into our experience with infertility, and chose a childfree lifestyle as our resolution. I’ve always been crafty and took solace in creative hobbies. When my sister announced her pregnancy in November 2013, I struggled a lot emotionally. The second I laid eyes on my nephew, I fell in love with him and wanted to give him the world. I had a strong urge to carry on my late grandmother’s tradition of gifting new babies with her handmade quilts. My nephew received my first quilt, and I’ve finished 6 others since September 2014. This quilt is the fifth I started, and was used as a prop in the photo session my husband and I did to celebrate of fifth wedding anniversary.”
-Brooke
Brooke’s advice for others who have been diagnosed with infertility.
Jo:
Jo advocates at both the state and federal levels for changes that would improve the lives of those with infertility.
Jo shares with us why she wanted to participate in the ART of Infertility project.
Jo’s diagnosis includes diminished ovarian reserve and cysts, while her husband has male factor infertility due to a previous vasectomy. Here, she explains more.
After many cycles of both IUI and IVF, Jo has never been pregnant. Listen to the two clips below to hear about her treatment and how she has had to pay for them out-of-pocket since she has run out of insurance coverage.
Jo’s tattoo of an eight cell embryo was created by artist, Jude LeTronik.
Recently, Jo got a tattoo to honor her journey and has a sort of prayer, or spell, for her next upcoming IVF to work. Listen to her talk more about the reasons why she chose this image. If you’d like to learn more about the tattoo artist, you can check out her website. http://www.judeletronik.com
I was very fortunate to wake up this morning in our nation’s capitol, where I will be advocating for legislation to help those with infertility. Sara Elliot, our guest blogger this week, was hoping to make the trip this year and was unable, but wanted to share her story with us via the ART of IF blog. Thank you, Sara for sharing your story with us!
Elizabeth
Art Journaling to Cope with Infertility
Many in the infertility community will be making their way to DC this week for Resolve’s Advocacy Day on Capitol Hill.
I can’t be there to advocate this year in person, but I still I wanted to help raise awareness about the 1 out of 8 couples who month-after-month, year-after-year are trying to build their family by any route available to them.
Let’s start with this. I never thought that I’d be a person who would “do” IVF. It’s taken a long time to come to terms with the loss of control over my body and my reproduction. With a diagnosis of PCOS and subclinical hypothyroidism, I am now both infertile – meaning we tried to get pregnant for over a year without assistance – and have experienced recurrent pregnancy loss. The combination is so difficult.
Around the time I first went to on OB/GYN to get testing, I found out that it took my grandparents 7 years to conceive my mother, so there is likely a genetic component to what I am going through. I remember my grandma saying, “Our children came along later” but I didn’t understand infertility might be the cause until I was faced with it myself.
For reasons we’re still trying to figure out with our doctor, we’ve conceived four times through assisted reproductive technology – 2 IUIS and 2 IVF cycles – and lost all 4 pregnancies. One was ectopic. One had a heartbeat we got to hear twice.
While going through this recent IVF cycle and loss, I turned to art journaling to process the emotions of this heart wrenching experience. I made a point to draw just a little bit every day, even if all I could muster was a few words in black pen. I’d often fill in the color on better days.
The art journal is a record of what kept me going, including song lyrics and reminders to take care of myself.
At the start of the New Year, I pick a new word to focus on. This year the word I chose was “Become.” This song by Iron & Wine got stuck in my head for weeks, so “Become the rising sun” has become a phrase I focus on a lot.
When we got an unexpected positive pregnancy test in February, I tried to remember to be happy in the moment. I was very anxious, given our history of loss. During this cycle, I saw the trailer for the documentary One More Shot by Noah Moskin and Maya Grobel Moskin. When Maya said, “In this moment, I am happy” I sobbed realizing how hard and necessary it is to grab a moment of happiness amidst all the bad news.
Fear of loss is a very typical response for women who have been through so much to get pregnant. Many infertile women talk quietly about the post-traumatic stress they experience. In the end, the only choice is to surrender, continue to persevere, and to figure out how to rebuild a life that includes more than just a few moments of happiness.
***
In 2010, my husband and I moved back to our home state of Michigan to be near family as we tried to have children. As the years of trying to conceive and maintain a pregnancy unfolded, an added heartbreak was that if we’d stayed in Massachusetts, our IVF health care costs would have been covered by insurance because state law in Massachusetts mandates coverage for IVF. Michigan law does not. Federal law does not. Money that we’d intended for a retirement account or a child’s college fund was instead spent on medical bills that were uncovered by our health insurance.
And let’s be clear – female and male sterilization is covered by our insurance plan, yet the most effective treatment for infertility, IVF, is not covered. As far as I can tell, the only logic for this policy is cost savings for the insurance companies. No working reproductive systems means no babies which means no hospital births and no well-baby visits to pay for on family insurance plans.
Despite all of our bad luck, we are lucky that we have some savings to spend on our health care needs. Many couples do not. And frankly, no one should have to spend five figures out of pocket to treat a diagnosed medical condition.
Only laws can change this situation.
Thank you to the women and men who are in DC advocating on our behalf this week.
Today’s guest post is from Kristin Phasavath. I met Kristin at RESOLVE, the National Infertility Association’s, Southern California Walk of Hope in Long Beach last September where we set up an appointment for her to be interviewed and photographed for the project. Kristin has a unique perspective because she was first a nurse at a fertility clinic and then, while working there, experienced secondary infertility and was a patient herself. Here, she shares her experience creating the oil painting, “Fertility Tornado”, which debuted at our pop-up exhibit in Calabasas and will be exhibited in Washington, D.C. next week. Thanks for sharing your story with us, Kristin!
Elizabeth
Fertility Tornado
My inspiration for the fertility tornado came from my time as a fertility nurse and a fertility patient. When you are in the throws of anything fertility it feels like you are in a tornado, whether you are a patient or a nurse. As a fertility nurse there is so much to organize for each patient all day everyday. Appointments, procedures, schedules, medications, labs, forms, insurance, etc, etc, etc…the list goes on and on and on. As a patient you deal with a very similar list that encompasses every breath you take. It effects your health, marriage, intimacy, mental status, finances, schedule, family life, and this list goes on and on. There is not one corner of your life this fertility thing does not infiltrate. Keeping everything straight as a nurse or a patient is like a tornado.
I wanted to create a visual concept of what this fertility tornado looked like to me. Once I sat down to paint, it really just painted itself. I think that I had lived with this statement and vision for so long it just poured out in an instant once I put brush to canvas. The process was amazingly fast. I think that the initial painting took less than an hour. It had wanted to come out for so long. It was very cathartic to me and I felt lighter when I was done. Like I had ironically enough given birth. Once I made up my mind to actually start the painting it flowed very easily, like it was what I was meant to do. No challenges in my way. It just felt good to finally let all my feelings out. There was a moment that I did get a little choked up because it felt a little like the end of an era. A little finality involved.
Kristin with her oil painting, “Fertility Tornado,” and her project portrait at the ART of Infertility pop-up exhibit in Calabasas, CA on April 25, 2015.
I was so proud to be able to share my painting at The ART of IF exhibit. I’m certain that I am not alone in feeling the way I do about this world of fertility. I hope to connect with many of my fellow fertility comrades thru this work of art. I thank Elizabeth for giving me an opportunity to be interviewed & photographed. She really inspired me to share my story and create this painting. The work she is doing is very important and I hope it has a long life. I’m not sure if I will create any more paintings but you never know. There is so much inspiration in connecting with others that share a similar story that it might spark my creative fertility juice again.
This is actually a guest post within a guest post! We had the honor of meeting Dr. Paul Turek from The Turek Clinic in Beverly Hills and San Francisco at our event in Calabasas, CA last week. Dr. Turek is passionate about art and we are excited to have him as an ART of Infertility sponsor!Maria and I are very determined to include the stories of more men in the project and had two fantastic interviews with men while in California. We’re hoping to hear from more men who would like to share their stories and are working on developing ART of IF programming that will strike a bigger chord with men. Stay tuned! This is a two part blog so we’ll run this one today and another in a couple of weeks. Thanks, Dr. Turek for sharing your blog with us! Here’s a link back to Dr. Turek’s blog so you can read more posts from him. ElizabethA Year Without Answers
This is a guest post from a patient who lives in Europe. He recently recontacted me about his experience with male infertility and how it affected him. Moved by his story and by his emotional fortitude, I asked him if he could share his remarkable journey with others.
“The day we met with Dr. Turek was a week filled with hope and happiness. Almost a year earlier, on the same day, I went through a biopsy with the result that there were no sperm. So when we found out about Dr Turek, this really felt like the last chance, the last hope. Therefore the decision to travel across the world to see him was an easy one. The visit and procedure went well, but, again, the result from mapping showed no sperm. And no answer as to why this is.
It has been a year since I spoke with Dr. Turek about these results, a year characterized by disappointment, anger, sadness and worst of all, no answers. There were simply no answers to be found. Why me? Why now? What now? Literally a thousand questions ran through my head interfering with my daily life, keeping me up at night and affecting my relationships. I had never felt anything like this before.
I wanted so badly to not feel alone in this. I wanted someone to understood my plight, without me having to explain every small detail, because you can´t explain this feeling.
I needed to talk about it. I just couldn’t bury it. But, who was I going to talk to? And what would I talk about? I felt isolated as there appeared to be a big taboo regarding this topic. Anyone I spoke to told me focus on other things in life. But how are you supposed to do that when all you think about is the fact that you can’t have your own children? I knew no one with a similar experience who would step forward and talk about his experiences and feelings. Google searches were pointless, as the Internet does not care and information on coping is useless.
That year was best characterized by the feeling of being lost and trying to find my way in darkness without a map or light. I felt that I was in a deep, dark place, especially when I tried to look forward into the future.
Feeling alone, I began suppressing everything. All feelings, thoughts and discussions were avoided. I told my close family that I did not want talk about this matter anymore. It was a buried subject for me, never to see the light of day again. The reason for this was that talking about this issue within the family only made things worse. One problem with this approach was that the bright spots in my life also suffered along side. The subject became an 800-pound gorilla that, although ignored, never left the room. Maybe the gorilla was bigger than 800-pounds as the family dynamics changed greatly.
Then I became angry, sometimes uncontrollably. This was when I could see that I was approaching rock bottom. The slightest annoyance, comment or action sent me into a furious rage where I often exploded at whomever was next to me. Many times it was my wife, which led us to the brink of divorce. We were both tired of fighting and there appeared to no other solution to end the fighting but dissolving the marriage. This moment was a real eye opener for me.
What helped keep me going to some degree during this time was my job. As a futures trader, my work was very involving and in the moment. Believe it or not, it was also logical and predictable, in a mathematical sort of way. It could be explained and reasoned with and while doing it, I could leave all my troubles behind. But I couldn´t hide in my job forever.
I turned the corner at rock bottom when I realized that if I did not start controlling my emotions and start being honest with myself, my life as I knew it would change dramatically. It was on that day, a very cold one in December, that I realized that I was just too exhausted to continue to fight with myself and others. I couldn’t bear to face another year continuing on the same as the last. So, I stopped lying to myself and began to face the reality of my emotions.”
The second and final part of this guest series will be available Monday, March 19th.
GET HELP TODAY
Schedule a private consultation or second opinion with Dr. Turek to learn more about your treatment options and get all your questions answered.
