OCD Support Groups: Why to Join Them and How to Find Them
OCD support groups are not a new concept, existing in the olden days of the 1980s before the internet was our way of life. But the invention, and then expansion, of the world wide web has taken support groups to the next level. While you can still seek support in person, practical proximity is no longer a requirement. And that means many people who want support, can more easily find it (assuming they have access to Wi-Fi).
The Reasons to Join an OCD Support Group
Finding a support group is pretty straightforward; it’s deciding to join one that’s the hard part. It’s not easy to put yourself out there, allow yourself to be vulnerable, or talk to strangers about your innermost thoughts and feelings. But many people find that it’s worth it.
In fact, there are typically several reasons to join a support group, including:
To Learn You Aren’t Alone: Perhaps the biggest reason to join an OCD support group is to learn you’re not alone; the old “misery love company” adage rings true for a reason. When people with OCD are able to speak with or commiserate with others who have it, they’re able to normalize their experience and feel less shame in the process.
To Hold Yourself Accountable: Many support groups are designed with successful treatment in mind. While members are on their own healing journeys, groups help individuals hold themselves accountable by giving people a platform to report successes as well as failures.
To Express Your Feelings: Expressing yourself, even if it involves revealing embarrassing or anxiety-provoking thoughts, can be very healing on its own. It can be empowering too and give those with OCD a sense of control over their lives even if they don’t have control over their thoughts.
To Explore Useful Resources: With the help of the internet (as well as your therapist), there’s plenty of opportunity to explore resources that are useful in treatment. Support groups also act as a place to learn more, especially from an anecdotal standpoint. Members can discuss what medications or supplements have worked for them, how to perform ERPs more successfully, how to practice coping skills, and how to avoid triggers or relapse. They can even give tips on dealing with pesky insurance companies.
To Gain a Sense of Hope: OCD is a very isolating disease, particularly for people who have some of the more shameful flavors such as Pedophilia OCD or Harm OCD, and at times it can feel very hopeless. Support groups help shine a light on people who have recovered from OCD or who are thriving in spite of it, giving others still in its grasp proof that the hard work in treatment does result in positive outcomes.
To Help Others: Support groups aren’t just about getting support; they’re about giving it too. Being an advocate for others with OCD helps one be an advocate for themselves and many people find that group therapy, because you can give advice or get it, is a powerful two-way street.
To Save Money: Getting an OCD therapist isn’t always feasible from a financial standpoint, particularly if therapists in the area don’t take insurance or your insurance doesn’t cover treatment without meeting a high deductible. Many support groups are free, but even the ones that aren’t are generally much more affordable than one-on-one sessions.
To Reduce Stress: Stress doesn’t cause OCD but it’s especially gifted at making it worse. Support groups won’t reduce your stress level from a 10 to a 1, yet they can decrease it dramatically for all the reasons listed above.
Red Flags to Watch Out For
While the majority of support groups are genuine and sincere in their quest to help those with OCD, not all of them are legit. You’ll avoid some costly and questionable situations by looking for certain red flags.
These are not hard and fast rules, but it’s smart to avoid support groups that give you pause (and if you don’t want to avoid them entirely, at least vet them further). In general, some of the things to look out for include:
A support group that promises to cure OCD: It’s possible to recover from OCD so dramatically that you’re no longer diagnosable by medical standards. Yet, even with this, OCD is not curable; it’s only manageable. Be wary of anyone who says otherwise, particularly if the “cure” they’re peddling comes with a hefty price tag.
A support group that promotes alternative treatments only: There are all sorts of things that may help ease symptoms of OCD, including yoga, meditation, mindfulness, CBD, or cutting out caffeine. But these serve as supplemental treatments, not gold-standard ones. Exposure and Response Prevention (an arm of Cognitive Behavioral Therapy) is the most important modality when it comes to OCD. Any group that ushers its members away from ERP also ushers them away from healing.
A support group that is anti-medication: Medication isn’t effective in everyone with OCD; it is, however, effective in most. It doesn’t serve to make the intrusive thoughts go away but it does make them easier to deal with while making ERPs less challenging to complete. Whether any individual takes medication is a choice that should be made by them in consultation with their doctor. The danger of support groups that are anti-medication is that, for some with OCD, medication may play an instrumental role in getting better.
A support group that involves high fees: There are plenty of OCD support groups that cost nothing, but it’s not all that unusual for them to cost as well. Usually, the price is minimal (such as $25 dollars) and the support group involves clinicians or therapists, which allows participants to receive professional advice for the money they’re paying. Stay away from anything that charges a lot, especially if it’s peer-led. There’s a difference between helping people and taking advantage of them.
A support group that turns into a sales pitch: Think twice about any support group with members or leaders who attempt to sell you products, whether it’s a supplement, a magical elixir, a book they wrote, a class they designed, or, yes, snake oil.
A support group that isn’t productive: As mentioned earlier, misery does indeed love company but this comes with a caveat. A support group that focuses on how terrible OCD is without offering any positivity or glimpse of hope won’t do you any favors. You want to join a group to feel better…..not worse.
A support group with judgmental members: One of the worst things for people with OCD is to be judged for the disease, whether that judgement is applied to the intrusive thoughts or the compulsions performed to stop them from coming true. A support group that has a member (or members) who shames others puts itself at risk for contributing to making OCD worse. And that’s the last thing support groups should do.
Support Group Options
Now that you know why to join a support group as well as what kinds of situations to avoid, it’s time to choose the right type of group for you. In today’s modern world, there are all sorts of ways to seek support, including online or in person.
Email groups offer email discussions (no big surprise there!), with several diving into the specific flavors of OCD. One of the most well-known is found at OCD-Support. This group focuses on “helping people with OCD improve their lives through the use of evidence-based treatments of cognitive behavioral therapy, including exposure and response prevention, and the proven OCD medications.”
The group is moderated by Wendy Mueller, who is recovering from severe OCD, and James Claiborn, a psychologist who specializes in CBT. Interested parties can sign up and choose their email settings and they’ll receive email alerts directly to their inbox. This can feel overwhelming for some, which might require changing your subscription status as needed.
Social Networking Sites
Perhaps the easiest way to find OCD support is through social networking sites, a nod to the world we live in. These do not involve planned meetings but they do allow people to ask for support (or give it) on their own schedule.
Some of the more popular sites include:
OCD Tribe: This is a peer-to-peer support group that helps people make OCD more manageable. It offers encouragement; a place for people to share their own stories, successes, and failures; and a place to make friends who get it.
Everything OCD: Everything OCD is a closed Facebook group created for those with OCD as well as their spouses or families. It offers support, encouragement, and “light humor.”
OCD Only Support Group: OCD Only Support Group is also on Facebook. It’s private and has around 24,000 members. Its mission is as follows: “We are all people outside of our mental illnesses, trying to find love, support, caring, and understanding.”
Parents of Children With OCD: This closed Facebook group is not open to those with OCD but rather parents of children who have it. You must fit into this category in order to join and they take privacy very seriously.
OCD and Related Disorders Resources International: Another Facebook group, the goal of OCD and Related Disorders Resources International is to “help educate and share resources, which are easy to access on one page. This group is where licensed professionals, advocates, and members can come together to share educational information and help guide those to assessable treatment options.”
Reddit OCD: It turns out that Reddit isn’t just a place to share Karen memes or ask celebrities about their favorite thing to eat. There’s tons of OCD-related stuff on here as well with around 100,000 members on the main OCD page. You can also access chats regarding more specific types of OCD, such as Relationship OCD and Pure O OCD.
Online Support Groups Through Zoom
While Zoom meetups were certainly happening before the pandemic reared its ugly head, they are more prevalent now. This is likely to be a permanent change as online support groups cast a much wider net than local ones. They also involve virtually no overhead (you don’t need to rent out a room in the basement of the local dance hall, for instance).
Zoom support groups are often held at regular times and people can join if their schedule allows. One of these takes place in Los Angeles but is accessible to people all over the world. The Monday/Wednesday Night OCD Support Group (Online via Zoom) is described as follows: “Weekly low-fee, experienced facilitator-led coaching/support group. Family members affected by OCD are also welcome to attend. Our goal is to create a space for dialogue that offers the unique opportunity to receive multiple perspectives, peer-to-peer support, and encouragement in a confidential environment. Primary focus is CBT, with emphasis on ERP. Also focuses on Mindfulness-based CBT and Acceptance & Commitment Therapy (ACT).”
OCD Peers is another platform that offers support through videoconferencing. Per their site, they are, “An online program providing group support for individuals living with Obsessive-Compulsive Disorder. We offer education, support, and a sense of community. All of our group facilitators are trained and often certified as Peer Support Specialists in the state or country in which they live.”
Participants can sign up on days or times that work for them or choose meeting topics that are of particular interest (such as avoiding relapse or self-compassion).
In-Person Support Groups
As mentioned above, in-person support groups are becoming less common because of the Coronavirus. But they are still happening at various places across the country (though it’s smart to check ahead regarding any specific group and make sure they have not transitioned to online only).
In-person groups don’t have the convenience of virtual ones (you have to leave the house, fight traffic, and wear pants) but there is something to be said for meeting face-to-face. It’s more intimate and this facilitates bonding and, possibly, faster healing.
Anyone interested in finding in-person support near them has a few options. They can ask their therapist if they know of any (many do), they can google “OCD support groups” with their city or zip code added in, or they can ask for recommendations via some of the other resources mentioned above.
One of the most efficient ways to find support is through the International OCD Foundation. Their main page features a “Find Help” section that allows you to search for support groups by city and state or zip code. It may not be up-to-date, so always verify before you show up. No one wants to arrive at an abandoned building on a winter’s night. That’s creepy, whether or not you’re riddled with anxiety.