Meet Wendy Mueller: The Woman Behind OCD-Support

Last week, we announced the 2014 IOCDF Award Winners who will be honored at the 21st Annual OCD Conference in LA next month. Among them, is Wendy Mueller, moderator of the OCD-Support group on Yahoo! and longtime member of the IOCDF.  Wendy has touched the lives of many in the OCD community, posting messages of hope, helping people find the resources they need, and just being a source of comfort. Today’s blog is a guest post from Wendy about how she became involved with the IOCDF and how she became the moderator of the world’s largest OCD support group. 

Twenty-six years ago, I gave birth to my first child. The day before she was born, I felt good. Within a few days after she was born, I knew something had gone terribly wrong inside my brain, but I didn’t know what it was. I now know that I developed OCD almost overnight when I gave birth. Within weeks, I sank into a deep depression and sought out the help of a psychiatrist, but I had no idea why I was performing strange, unwanted, repetitive rituals of checking, arranging, repeating, and counting things virtually every waking moment of my day. I had never heard of OCD. I didn’t tell my psychiatrist about the OCD symptoms, because I thought he would proclaim me “crazy” and put me into a psychiatric hospital.

One day about a year after I first developed my OCD symptoms, I picked up a copy of Newsweek magazine and read an article about what OCD is, and that’s when I realized what was wrong with me. The article was about a woman named Patricia Perkins, who was working to recover from severe OCD and was co-founder of what was then called the Obsessive-Compulsive Foundation (now the IOCDF) in Connecticut. The address and phone number of the OC Foundation was given in the article, so I immediately called their office and asked if they knew of any OCD support groups in my area. Amazingly, there was a good-sized OCD support group meeting within a mile of my house in Orange County, California. I started attending the monthly group and was amazed to meet a roomful of people who experienced the same odd thoughts and performed the same odd rituals that I did. It was such an amazing relief to know that my disorder had a name and that there was an entire organization in Connecticut dedicated to helping people deal with this disabling condition. I joined the Foundation in late 1988, received their packet of introductory materials, and starting receiving the OCD Newsletter in the mail several times a year. It was amazing to read stories in the OCD Newsletter written by people who experienced the same things I did, and I looked forward to each issue that the Foundation sent out.

I got my first home computer in 1990 and signed up with the Prodigy computer network. Like most first-time computer owners, I had fun finding web sites and groups that related to my interests. One day I found the Prodigy health bulletin boards and searched to see if there was an online group for people with OCD, but there was none. There were online groups for people with depression, anxiety, bipolar disorder, and many others, but I couldn’t find anything relating to OCD. So I created a new topic heading called “Obsessive-Compulsive Disorder” and posted a message asking if there was anyone else out there who had OCD and would like to communicate online. Bit by bit, people found my online OCD group, and we slowly grew from 5 members to 20 members and finally to about 50 members. I continued to post messages to the group each day, offering suggestions for discussions about medications and CBT and asking people to share their experiences. It felt like a safe place for all of us to go where we could talk to others who understood what we were going through with our OCD.

One day, a doctor by the name of Michael Jenike found my OCD group on Prodigy and offered to participate and answer questions. I also found an OCD therapist from Florida, Bruce Hyman, who also offered to contribute. The group continued to grow.

In October 1993, the Foundation held its first annual conference at a hotel in Bloomington, Minnesota, and I was determined to attend. It was a life-changing experience for me…a whole weekend of talking to people who were just like me. I remember sitting at the round tables in the main meeting room, exchanging email addresses with people from all over the country who were interested in joining my online OCD group. At the time of this first conference, I was still suffering from severe OCD, so I went to the conference as a sufferer seeking help. I went home with the names of about 30 different people who wanted to keep in communication either by email or letter or phone.

That first conference had such a positive impact on my life, I was determined to keep attending the annual conferences every year or at least as many as I could. Over the years, I have attended 10 of the OCD Foundation’s Annual OCD Conferences, and each one has been such a positive and inspiring experience.

Ever since my diagnosis of OCD in late 1988, I had been trying to find a medication to help me with my OCD. In early 1995, I started on liquid Prozac and, my own personal miracle started to take place. The Prozac, combined with learning exposure and response prevention (ERP), turned my life around.

I went from being disabled by constant OCD to being nearly free of it. And that’s when I started attending the Annual OCD Conferences not as a sufferer, but as someone who had recovered tremendously and wanted to spread the message that if I could overcome severe OCD, anyone could. I also spread this message on a daily basis on my online OCD group, encouraging people not to give up because there was always hope.

In 1994, a large online OCD support group called the OCD-L List was started up by Chris Vertullo, and its membership grew to hundreds of members. In 2001, Chris’ busy schedule caused her to turn over leadership of the group to me, after I had been a contributing member to that group for about 5 years. Along with my co-moderator Sheila Cavanaugh and contributing professionals Drs. Michael Jenike, James Claiborn, and Jonathan Grayson, the group was renamed the OCD-Support List, recreated under YahooGroups, and has continued to grow to its present membership of more than 4,700 people worldwide.

Every day, new people join the online group and I do my best to send as much relevant information as I can to each new member according to their particular needs. Some people join the group desperate to find others who understand their isolation and suffering. Some are distraught parents, siblings, spouses, or adult children, hoping to find some help for their loved one with OCD. I have directed thousands of people towards finding the help they need, whether it be an OCD therapist or support group in their area, information available on the IOCDF web site, or references to professional articles on various aspects of OCD. And every day I receive messages from people who are very grateful for the wealth of information provided by our online group and for finding the first glimmer of hope they have been seeking.

Not a day goes by that I don’t remember what it was like to spend every waking moment in a black hole of depression due to my inability to control my OCD. And not a day goes by that I don’t feel extremely blessed to have recovered from my OCD. I have made it a huge part of my life to do everything I can to help others who are still suffering. My main goal is to give hope to those who thought there was no possible hope for getting better by sharing my own personal story of recovery.

Wendy will be presented with the IOCDF Patricia Perkins Service Award on Saturday, July 19th at the 21st Annual OCD Conference in LA. Please join us to congratulate her in person.