This week, April 20-26 is National Infertility Awareness Week. In 1989, RESOLVE: The National Infertility Association founded National Infertility Awareness Week. In the 25 years since then, technology has evolved and the Internet has emerged. Medical advances have been made and there is now a wealth of information about infertility, medical treatments, alternative treatments, support groups, blogs about fertility, social media, you name it, all available online. In recognition of the 25th anniversary of National Infertility Awareness Week (NIAW), RESOLVE reached out to experts in the field to get their opinions about what has, and hasn't, changed for people with infertility in the past 25 years.
Seeking Support
RESOLVE: RESOLVE was founded by a woman who was a nurse and who started the first RESOLVE support group. Support is the foundation on which we continue to serve the infertility community. With the growth of the Internet, has the need for support changed?
People with infertility are using the Internet not just for information, but to seek support. This is positive progress, but online interaction cannot replace in person contact.
"I do believe the emergence of social media and blogs has afforded people the ability to be more public about their fertility struggles. For some people, they can remain anonymous while sharing their personal struggle and, at the same time, remain genuine about their deepest feelings and emotions. Blogs are a wonderful option for people to share their experiences with others in a way that is unparalleled. Certain blogs are regularly followed and can be re-published in a way that only the Internet allows to reach an exponentially larger number of interested readers." - Laurie B. Goldheim, Esq., President-Elect of the American Academy of Adoption Attorneys
"It is easy to be anonymous online. However, anonymity brings with it also the ability to be cruel and judgmental." - Alice D. Domar, PhD, Executive Director, Domar Center for Mind/Body Health; Director of Integrative Services, Boston IVF; Associate Professor of Obstetrics, Gynecology and Reproductive Biology, Harvard Medical School; Author, Conquering Infertility
"Definitely in the past infertility was kept private because it was an embarrassment, a sign of failure. A certain proportion of people are happier that they can share their experience. However, a certain number of people don't want to share. They like to be voyeurs and go to social networks to see what other people are doing, but they definitely don't want to share their own experience because they are very private. And that's human nature; that's probably been the same for thousands of years and technology is not going to change that." - Alan H. DeCherney, MD, Chief, Reproductive Biology and Medicine Branch Director, Program in Reproductive and Adult Endocrinology Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health DeCherney
Reaching a Resolution
RESOLVE: We've talked a lot about the increase in awareness, support and family building options. Do any of these positive steps create challenges for someone with infertility?
Increased options and choice make reaching resolution a challenge, and couples who seek treatment generally try, or feel pressured, to try longer.
"I think it is very different since 25 years ago there were not many options. If the limited treatment available didn't work, it was childfree or adoption. Now couples are faced with a myriad of choices, which can make it more hopeful but also more challenging. It is far rarer for a physician to now say that there is nothing more to be offered." - Alice D Domar, PhD, Executive Director, Domar Center for Mind/Body Health; Director of Integrative Services, Boston IVF; Associate Professor of Obstetrics, Gynecology and Reproductive Biology, Harvard Medical School; Author, Conquering Infertility
"I think resolution is even more difficult because of all the medical options out there, making it harder to say, 'enough is enough.'" - Diane N. Clapp, BSN,RN, former Medical Information Director at RESOLVE: The National Infertility Association
Thoughts About and Hopes for the Future
RESOLVE: Do you have a wish or hope for the next 25 years of infertility awareness?
"I think public awareness about infertility will improve significantly. My hope and expectation is that the general public will understand infertility in a way that eliminates unnecessary and intrusive questions to families who grow their families in less traditional ways." - Laurie B. Goldheim, Esq., President-Elect of the American Academy of Adoption Attorneys
"I hope awareness continues to grow, and that more celebrities will come out of the closet and be open about the emotional and financial challenges. It would be even better for a high profile politician to do so." - Alice D Domar, PhD, Executive Director, Domar Center for Mind/Body Health; Director of Integrative Services, Boston IVF; Associate Professor of Obstetrics, Gynecology and Reproductive Biology, Harvard Medical School; Author, Conquering Infertility
"It is the awareness of how many people long to have family and this is an innate drive that we have that is not going to go away. Infertility is not going to disappear and the need for resources is going to continue to grow. Hopefully with technology it will be easier for people to get access to care, it won't be as expensive, it won't take as long, who knows. But it is not going to go away." - Sharon N. Covington, MSW, LCSW-C, Director, Psychological Support Services, Shady Grove Fertility, Reproductive Science Center
Conclusion
Since National Infertility Awareness Week began 25 years ago in 1989, there have been significant advances in medical and information technology, expanding the medical options available to infertile people to conceive a child, the ways in which they gather information about their infertility diagnosis and family building options, and how they seek support. Although more options available to people to conceive a child and more widespread information about the option of adoption inspires hope, reaching resolution has become more difficult. "What has not changed is the fact that going through infertility is an emotional crisis. Now there are even more choices that both an individual and their partner, if they have one, have to agree on," remarked Diane Clapp.
Most of the contributors are glad that more options are available to people, however, they view this as an additional emotional challenge. Compared to 1989, people with infertility now persist longer with infertility treatments, increasing the amount of time it takes to reach resolution, not to mention the financial impact. We hope that as public awareness about infertility and access to care improves, people with infertility will be more prepared for their infertility journey and they will have the resources they need to feel more supported, both by their community and by legislation that gives them access to care they would receive for any other medical disease, helping them feel less isolated. Know that at RESOLVE, we are fighting for you and are committed to ensuring that everyone diagnosed with infertility has the support and information they need to reach their resolution.