Virtual World, But Real Connections

I've noticed that the history of the online parent community around eating disorders somewhat mirrors how parents have fared in terms of the treatment of their child; it started off non-existent, involved a lot of blaming and shame in the middle, but I can now report a new attitude is spreading around the world.

In 2002, the only information I could find on the Internet about parents and eating disorder care was “be afraid. Be very afraid.” There was a lot of “what not to do” and little practical advice.

Back then, when I first started to learn about eating disorders after my daughter's diagnosis, I could only find one website where parents were talking about eating disorders. At the time, I had no way to find local parents going through the same challenges, to find local resources, or to learn about caregiving in this peculiar situation. When I did find that message board, despite differences between the parents, the isolation I felt was very much lightened. I got information about the illness from the perspective of carers. I felt understood.

4 Things I've Learned About Eating Disorders and the Internet

Lesson one: parents and carers need different online resources than patients, friends, and the general public.

The Internet, in 2002, did not have much about eating disorders because the public and the media knew so little. One or two ideas that had currency then dominated the narrative. As a community of parents has grown through interconnected blogs and forums, and now even Facebook and Twitter, the narrative is changing too. PubMed and other sites offering access to primary resources are available and have become part of the conversation. Researchers and clinicians are now blogging and responding directly to the public. As a result, a range of knowledge is now shared and there are more ideas.

Lesson two: The Internet is getting smarter, and parents and carers are teaching one another to use it wisely.

The dangers of the Internet have changed as well. While so-called “pro-ana” sites existed years ago, they have grown and gone mainstream – partially due to well-meaning but unhelpful media coverage. Because our children are often one step ahead of their parents in technology, it is not uncommon for the Internet to provide unhelpful clues in how to hide one’s illness, for young people to seek out the companionship of fellow sufferers with whom they compete, and for our children to track our own activities.

Lesson three: The anonymous nature of the Internet offers parents the ability to seek information and support without losing privacy, but with that cloak comes difficulties as well.

Most parents will not have access to a friend or neighbor who can relate to their experience or have current information – making the Internet an important tool. For eating disorders information, the Internet allows access to science and reporting and expert opinion that could not be found at a library or in increments of scheduled doctor or therapy appointments. As an activist, I have been able to locate and be located by thousands of people around the world with common interests and from that networking have been both well-educated and well-supported.

Lesson four: real information, real activism, and real friends are possible through the Internet.