Managing Infertility Online

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Online Support Communities Could Be Your Lifeline

Published in the Fall 2011 Issue of Resolve for the journey and beyond.

Does your struggle with infertility leave you feeling isolated?  Do you ever wish you had someone to whom you could vent about the insensitive thing your mother-in-law said about deserving grandchildren?  Or would you like someone who has “been there and done that” to ask for advice about how to talk to your doctor?  Wouldn’t it be nice to share updates about your IVF with people who understand, but won’t give you awkward sad stares if it’s unsuccessful?  Sometimes it’s just fun to compare what song you’ve adopted as your “Infertility Anthem” with people who share a common experience. 

Online support communities can be your lifeline when you need to reach out to people who understand what you are going through.  RESOLVE offers two types of online communities that offer different levels of privacy and engagement. 

Facebook

Facebook is a poplar social media site that many people already use.  The RESOLVE Facebook page has more than 6,000 “likes” or community members.  Reading the posts on Facebook is a great way to keep up to date on what’s happening in the infertility community.  RESOLVE posts useful articles, links and resources daily.  Members of the community post their own updates and thoughts as well.  The RESOLVE Facebook page gives you the opportunity to read, post, comment… and not feel so alone in your infertility journey.  If you are already on Facebook, joining the RESOLVE community is an easy way to add infertility the mix of topics you already read and discuss with family, friends and people with other common interests.

Keep in mind that Facebook is a public forum, so anything you post, comment on or even hit the “like” button will be recorded and broadcast for hundreds or even thousands of people to see.   Some people are fine with discussing their infertility publicly, but others prefer to limit the number of people involved in the discussion.  Is it okay with you if your old college boyfriend knows you are struggling with infertility?  Do you want to open yourself to discussing your infertility with friends and neighbors?  Some people want to keep this personal matter private, but many people have been surprised to discover the unexpected sources of compassion.

Another pitfall of Facebook is that you may not want to see every sonogram, picture and weekly pregnancy picture that some pregnant couples seem so overly eager to share.  Facebook isn’t for everyone, and many couples dealing with infertility have taken “Facebook vacations” to prevent being inundated with pregnancy posts. 

Inspire

If you prefer privacy or even anonymity, an Inspire community may be a good option for you.  RESOLVE has partnered with Inspire, a leader in building safe and secure online health communities, to bring you the latest in online community technology.  To participate in an Inspire community, you must register with the site and either use your name or select an alias.  Unlike other general-interest online communities like Facebook, the discussions on Inspire focus on a specific health issue. 

RESOLVE has two communities on Inspire:  Nearly 8,000 people are registered on the “Finding a Resolution for Infertility” community and the “Living After Infertility Resolution” community has 1,800 members.

When you join an Inspire group, you can log in and start or join a discussion at any time.  Also, you will receive a daily e-mail with a summary of topics currently being discussed.  As opposed to public social networking sites, discussions on Inspire are often achieve a level of detail you do not see on Facebook.  Community members share their beta results, compare notes about Lupron and ask for advice about egg donors, to list just only a few examples.  This is an informed community seeking support and sharing detailed information, so expect a variety of robust discussions about all aspects of infertility.

Coping in the Internet Age

RESOLVE’s online communities are a wonderful resource to help you know that you are not alone in your family building journey.  But they are only one component in your RESOLVE team.  Online communities serve a different purpose than in person support groups.  Nothing can replace face-to-face human interaction with a support group, family building professional or mental heath professional.  Medical advice should come from your team of medical professionals.