I am just back from Washington, D.C., where for several days I had the pleasure of hanging out with hundreds of fellow OCD
washers, checkers, counters, hoarders, and the like.
Insert punch line here.
[Oh, admit it, you've got something, right?--maybe a quip about the gallons of Purell floating around a gathering like this? Perhaps some reference to how well-checked our hotel doors and windows must be at night? It's okay: we, too, find the humor in our get-togethers!]
The occasion was this year's annual conference of the International OCD Foundation, a three-day gathering of not only OCD sufferers, but also their family members and a collection of the top OCD specialists in the country. This was my fifth such conference, and I have left each and every one with life-changing lessons that have fueled my recovery. The lesson for me this year could not have been more clear:
When it comes to recovery--from OCD or any other hardship--there is no substitute for friendships forged by common challenges.
I actually learned this lesson well over a decade ago, when I first met Carole Johnson, whom readers of my books know as the remarkable woman with OCD who jumpstarted my recovery in 1997. For 14 years now, Carole and I have shared with each other our innermost fears, our triumphs and setbacks, and our heartfelt commitment to supporting each other through the good times and bad. We have marveled, time and again, at how well we understand one another--often so much better than even our closest friends and relatives ever could--and how indispensible our shared insights have proven to be.
Truth be told, though, I think I've come to take for granted that everyone has a "Carole" in his or her life. And, as I was reminded in D.C., not everyone does. In fact, judging by the emotional nature of the connections I witnessed at the conference, far too many of the attendees had never before experienced the power of joining forces with others in their (tied and re-tied and re-re-tied) shoes. I left Washington determined to showcase the importance of these friendships and armed with the perfect case study to help me do so.
THE SIX PACK
On Day-1 of the D.C. conference, my dear friend Patti invited me to join her and some friends for lunch at a nearby restaurant. From the moment I sat down, it was clear this group of friends was no ordinary one. It was, I quickly learned, a collection of teens and parents who had changed one another's lives in the most powerful ways imaginable. It was.... The Six Pack and their support crew.
Four years ago, it seems, six teens with OCD--two from Ontario, Canada, two from Illinois, one from Missouri, and one from Ohio--met and bonded at the IOCDF conference in Houston. After three days of deep sharing, they said tearful goodbyes and went their own ways. But thanks to the Internet and Facebook, they kept in touch and vowed to meet up again--this time at the IOCDF conference in Boston. Inseparable, the Six Pack (as they dubbed themselves) again hung out, laughed, played, and shared their innermost OCD secrets. And while they were off rescuing each other, their parents began doing the same--swapping stories about the unique challenges of parenting children with OCD that only those who have done it can truly appreciate.
Another full year was too long for The Six Pack--and their parents!--to wait, so plans were made for a mid-year reunion. They met up in St. Louis for five glorious days. One teen couldn't be there, but joined in via webcam as much as possible. Six months later, they were off to Minneapolis, for the 2009 IOCDF conference. Then a surprise 16th birthday party for one of the Six Pack-ers in Chicago. And now here they were--alas, only three of the six and their parents were able to make it this time--in Washington, D.C.
So, why the commitment to staying together? I asked Emily, now 19 and coping extremely well with her obsessions and compulsions, for her thoughts: "You connect with these friends in a way that you can't with your other friends at home. When you are having a rough time with your OCD, you can always talk about it with the Six Pack and know that they will understand." Fellow Six Pack-er Ali, now 16, agrees: "Having friends that understand the struggles that I have gone through means the world to me and has helped me get better and beat my OCD."
And as for their parents, Patti puts the magic of their bond this way: "All parents worry about what the future holds for their children. When you are a parent of a child who has OCD, the worries and fears are far greater. Having a support system (one acquired through connections made by our children) really helps you deal with the insecurities and get through the tough times."
I'm not a doctor. I can't characterize with any authority the impact that this Six Pack bond has made on the remarkable teens who formed it. What I do know is this: Unlike far too many young OCD sufferers, these ones have learned--through therapy, the love of their families, and the support of one another--to thrive amidst their challenges. They are pursuing their dreams, individually and collectively. And their parents? Just try to separate them when they get together!
FINDING THAT FRIEND WHO UNDERSTANDS
If I had the money, I'd pay for anyone interested to attend the next IOCDF conference. Unfortunately my California mortgage is going to preclude me from doing that for a long while! What I can do is encourage you to start planning now for next summer's conference (in beautiful San Diego, by the way). And here are two more ideas for connecting with others who can truly understand and accept you as someone whose life has been touched by OCD: (1) join a local support group; or (2) join an online support group. For help with the first, I suggest you visit the IOCDF web site (or drop me a note); and for help with the second, I recommend that you find your way to my good friend Wendy.
Wendy Mueller has been leading online OCD support groups for 18 years, the last nine of which she has spent running the respected Yahoo! OCD-Support group. During that time, she has amassed a mindboggling 3,960 members! I asked Wendy for her thoughts as to why her project has become so popular:
"So many people with OCD are misunderstood and resented by their families and friends due to their OCD behaviors; but in a group of OCD sufferers, we all understand what we're going through, so there is great compassion and understanding for all members of the group. Also, when people who have recovered from severe OCD post their stories of recovery, it is a huge inspiration and source of hope for those who are still struggling."
From my perspective, Wendy's group works so well because of her commitment to helping members forge meaningful, life-changing friendships and networks--a cyber, large-scale equivalent of the Six Pack, if you will. [It's worth noting that, unlike far too many other online support groups, Wendy's includes the supervision of qualified moderators and the input of several of the top OCD docs in the country. This is crucial!] Want to discover the magic for yourself? Click here.
TAKING THE RISK
One of the questions I'm most frequently asked in my travels is, Should I go public with my OCD? I can't answer that, as I believe it's a deeply personal consideration for anyone with this disorder, and "going public" can mean so many different things--from telling a few family members to writing a book. Obviously, I have done so in the broadest sense, and I have not a single regret. But I have made OCD outreach my life, and it's not a life for everyone. That said, I have yet to meet a single person with OCD who couldn't benefit from confiding in, and getting support from, a fellow OCD sufferer. Likewise for spouses, parents, and friends of those battling the disorder.
Reaching out can be scary. I remember how petrified I was before my first conversation with Carole Johnson all those years ago. If you're able, talk it through with a therapist or someone else who already knows your secret. Consider doing it in one of the above-mentioned ways (with the support of the established OCD community). But on behalf of all of us who have gone before you, allow me to remind you of this:
You've got a friend.