Sunday, April 21, 2013

Join the Movement

When my husband and I were diagnosed with multiple fertility issues almost 2 years ago, it was a devastating time for us. It was heart-breaking and isolating. I felt that my husband’s diagnosis was particularly tragic – to be told at the age of 27 that he had less than a 5% chance of ever becoming a biological father shattered me as his wife. Infertility has affected the most private parts of our marriage, and is with us every day. I was – thankfully – fortunate to be a part of an incredible community online that provided love and support as we eventually came to the decision that we would choose childfree living as the resolution to our infertility. We were fortunate to have incredibly supportive parents, family, and friends. 

Not every couple is so lucky. Not everyone has the support of friends and family, and many people struggle in silence and/or lack of understanding. To the non-IF world, talking about these things is taboo, and there are misconceptions and hurtful opinions to endure frequently. There is a lot of pain, guilt, and isolation that 88% of the people we come across cannot even fathom. We have to teach people how to respond to us and how to be part of our support system. We have to tell law-makers how legislation can hinder and hurt us. We have to be the voices for our community, especially for those who struggle in silence. That’s why I’m Joining the Movement.

Being involved with infertility awareness and advocacy has been a big part of my healing, and it will continue to be as I get more involved. I’ve struggled a lot, especially early in our diagnosis. I admit I felt hard to find which way was up. It took the help of an incredible therapist to help me find my way – I’ve said it before, and I’ll say it again: she was the best gift I ever gave myself. There’s no shame in doing whatever one needs to do to get themselves on the right track when something like infertility threatens your dreams of a family. My hopes of making life as an infertile person a little better in society, a little easier on the wallet, and a lot more filled with love and support and understanding are what drive me. It’s something I want to do, but it’s also something I have to do. It’s how I feel fulfilled and happy and like I’m taking something awful and making it something good. Advocacy is my therapy. That’s why I’m Joining the Movement.

Each year, RESOLVE celebrates National Infertility Awareness Week with a blog theme, and this year, it’s Join the Movement. I am joining in because I have been touched by the support that RESOLVE helps provide through peer-led groups, the Walk of Hope, endless information on their website, and insightful discussions on social media. I’m joining the movement because of all the same reasons I chose to participate in the Walk of Hope. I’m joining because this is for US, where “us” is me and Buddy, our wonderful families and friends, the members of my support group, the friends who struggle alongside me in real life, and 75 very special ladies who’ve held me up for the last two years.

This is a screen shot from a video made to honor The 75 by one of its members, an incredible woman named Kati. This screenshot is about me. It brought tears to my eyes, right at my desk at work, the first time I saw it. They’re proud of me. Seventy-five strong, resilient, and beautiful women whom I’ve never hugged but who know some of the deepest parts of my soul, are proud. Of me. Seventy-five women I respect so very much. And it’s humbling. Because of their strength and support, I am strong.. Because they may be proud of me, but I’m 1,000 times more proud to know, represent, and be sisters with them. That's why I'm Joining the Movement.

Check out the Bloggers Unite Join the Movement posts at RESOLVE's NIAW page
Helpful links:
Infertility 101
About NIAW

Monday, April 15, 2013

NIAW 2013

National Infertility Awareness Week 2013 is only 6 days away! Below are status messages I've put together for Facebook, and you're welcome to borrow them. I plan to do one or 2 a day, and also plan to have spontaneous messages if a conversation is sparked in the comments or if someone asked something specific either publicly or privately. Last year, on the last day, I offered to answer any questions any one had. The only rules: be respectful and polite, and I'm free to refrain from answering something publicly (but will in a PM) if the answer is outside the guidelines Buddy and I have in place.

  • Thursday, April 18th: Sunday marks the beginning of National Infertility Awareness Week. This is an issue that is obviously close to my heart, but I also respect that it can be an uncomfortable topic for people. I understand if you choose to hide my feed this week, but I will assure you that you’ll learn something valuable. We all know someone dealing with infertility, and I hope to give facts, insight, and tips in hopes of helping my friends and family support others who’ve lost a piece of themselves to IF.
  • Happy NIAW 2013! This is an important time for us as a community to raise awareness and allow our voices to be heard. Please feel welcome to comment and ask questions at any time. I’m fortunate to be part of an online community of amazing women with a huge variety of experiences, and they’re invited to jump in at any time with anything they feel willing to share. I only ask that everyone please keep conversations polite and respectful.
  • Infertility is a disease that affects 1 in 8 American couples – roughly 12% of our population. Infertility is defined by the inability to conceive within 1 year of trying if the female partner is under 35. Over the age of 35, infertility can be considered after 6 months. Statistically, infertility is caused by a female issue in 30% of cases, a male issue in 30%, a combined issue in about 20% and the remainder of cases are unexplained.
  • Testing to diagnose the cause of infertility involves – at the very least – blood work at two different and specific parts of the female partner’s cycle, a sonogram of the fallopian tubes, and a sperm analysis for the male partner.  The testing can be ordered by an OB/gyn, but the proper specialist to interpret the results, form the plan of action, and treat infertility (including through the prescription of Clomid) is a reproductive endocrinologist. Often in cases where male factor infertility is a concern, a urologist will be consulted. Consult with your OB/gyn or insurance company for providers in your area.
  • Despite the fact that infertility is a disease of the reproductive system, very few patients have coverage through their insurance companies. Only 15 states mandate varying degrees of coverage, and employers are often able to exempt themselves through loopholes. This leaves most couples paying out of pocket for their testing and care.
  • The cost of infertility depends on the treatment plan. Most infertility treatments involve hormones and/or other drugs for ovarian stimulation. These are often not covered by insurance and can cost anywhere from a couple hundred to a few thousand dollars per cycle. Intra-Uterine Insemination (IUI), which is a relatively non-invasive treatment, carries an average cost of $865, and generally gives only a 10-15% chance at success. In-Vitro Fertilization (IVF), which is an invasive surgical procedure involving anesthesia for the female partner, costs an average of over $12,000 for a single cycle, and this may not include the thousands of dollars in medications needed. Donor sperm, donor eggs, and a manual fertilization procedure called ICSI serve only to increase these costs, making infertility treatment a financial hardship and sacrifice for most couples. Surrogacy is reported to cost a couple as much at $100,000.
  • There are a lot of misconceptions when it comes to infertility treatment. First, the goal is to create one baby, not multiples.  Stories like those of Octomom and Kate Gosselin are examples of irresponsible medicine and the ignoring of specialist advice. While certain procedures certainly raise the likelihood of multiples, this risk is carefully weighed against the goal to succeed with achieving pregnancy while not compromising the health of the mother or her potential fetus(es). Secondly, treatments are not always successful, unfortunately, and even with multiple rounds of IVF (which generally only comes with about a 40-50% success rate, at best), sometimes a pregnancy is never achieved.
  • “Just adopt” and “adopt and you’ll get pregnant” are things that couples who struggle with infertility hear often from friends and family, and can be very hurtful. Adoption is not an easy road, and it can cost twice as much as a single cycle of IVF, depending on the type of adoption chosen. While it offers an opportunity to parent, it doesn’t cure infertility or address the associated feelings of inadequacy and loss of biological lineage. Everyone knows someone who knows someone who’s adopted and then found themselves blessed with a spontaneous pregnancy, but that doesn’t happen for the majority of infertile adoptive parents, and it certainly shouldn’t be a driving reason to pursue adoption. It is a very personal decision, and should be chosen as a positive end to a couple’s infertility and not viewed as a second-rate option.
  • Choosing to live childfree is another valid positive choice as resolution to a couple’s infertility. Choosing childfree after IF means walking away from treatments and adoption, and embracing life with your partner as a family of two. While a couple is no longer going through the emotional roller coaster of treatment or the adoption process, there are still great losses, and they will be experienced throughout the couple’s lifetime. For insight on a couple’s personal experience choosing childfree after infertility, I highly recommend Sweet Grapes by Jean and Michael Carter as a great resource.
  • Infertility is something that is often not understood by a couple’s family and friends. Even though 12% of the population is directly affected, it’s often not talked about, and so friends and family may say things that are minimizing, hurtful , or offensive to the couple without realizing it. RESOLVE offers many resources, including “Infertility Etiquette” and Q&A for friends and family.