Online OCD Forums: Communities of People Who Understand
We live in a digital world; we now use virtual technology for everything from shopping and keeping in touch with friends to work meetings and even, sometimes, doctor’s visits. Although the use of some technology like social media has been found to have harmed our overall mental health in certain ways, it’s not all bad news.
The internet age has brought with it chatrooms and online forums, where we can find like-minded people to connect with. The OCD community has developed some of its own online forums as well, where those of us with OCD can connect with others with the diagnosis and share both misery and triumphs.
Here’s your guide on everything you need to know about online OCD forums: from the best forums out there to how to use them appropriately to help, and not harm, your mental health.
What Is an Online Forum?
Before we get into the pros and cons of online OCD forums, let’s quickly go over what a forum is to begin with. Online forums are places where people get together to talk about various topics: anything from cars to relationship issues.
Most often, the forums are set up in a way in which one person posts, and other people reply to this post. Unlike a chatroom, where people go back and forth in conversation, forums invite people to create longer and more detailed posts to which others can reply. A lively discussion about the topic-at-hand often ensues. Usually, posters are anonymous. Although there are topic-specific forums that include forums only on specific topics (online OCD forums are an example of this), there are also now websites, like Reddit, that host a wide variety of forums on every topic imaginable.
Online mental health forums, in particular, have been shown to help people (and young people especially) build relationships, feel less socially isolated, and feel empowered to talk about and get treatment for their mental illness.
The Benefits of Online OCD Forums
Many of us grew up being warned against interacting with strangers on the internet. Those warnings weren’t without their truth, as we’ll learn in the next section — but online forums can go a long way in providing support for mental health issues for people who aren’t getting it in their “real” life.
OCD affects between 1 and 2 percent of the world’s population; it isn’t likely that you’re surrounded by friends who also have an OCD diagnosis and know what it’s like to live with this disorder. In these situations, online forums can provide the support and understanding that you need and that you might be lacking amongst your inner circle.
Here are some of the possible benefits of using online forums when you have OCD:
OCD is pretty common, as far as mental illnesses go. At the same time, 1 to 2 percent of the population isn’t a whole lot — and you might be feeling like the only person in the world with OCD. On top of that, OCD is still highly stigmatized, so those with the disorder often hide their condition from people around them. This happens more often in countries and places that aren’t accepting of mental health issues in general.
All of this can lead to an extremely lonely and isolating experience with OCD. You might be terrified after receiving an OCD diagnosis, but not feel like you can talk to anybody about your feelings. Maybe you’ve been dealing with all of your symptoms all on your own. Maybe you live in a rural or remote area, and you’re pretty socially isolated from your peers to begin with.
For people who find themselves in this situation, online OCD forums can help decrease feelings of isolation. Of course, online relationships are never a replacement for therapy or psychological help, and you should always talk to a professional if you’re feelings of isolation are symptoms of depression or anxiety.
At the same time, if you’re having conversations on forums as a way to vent, to receive emotional support from your peers, or to simply feel less alone, online forums can often be very helpful. Talking with people who understand can remind you that you’re not the only one going through this journey.
Other people aren’t isolated, but feel isolated. Maybe your friends and family know about your diagnosis, but they just can’t understand in the same way someone who actually lives with the disorder could. Maybe, when you try to talk to them about it, they even tell you unhelpful and even hurtful things. Things like: “Just stop worrying so much” or “Nothing bad is going to happen, calm down!”.
People usually find open and nonjudgmental emotional support on online OCD forums. Because everyone understands what you’re going through, you’re less likely to get unsupportive comments like the ones above. People are more likely to actually listen to you, and to share their own experiences as well. In the best-case scenario, people on forums can also encourage you to get professional treatment.
It feels good, when you’re living with OCD, to have a place where you can proudly announce that you were able to resist a compulsion urge. It feels comforting to be able to tell someone that you were up all night ruminating on your obsessions, and to have that person truly understand. For too many people with OCD, online forums are one of the only places where they can depend on that kind of emotional support.
One big benefit of online OCD forums is that they’re almost always free resources. In an ideal world, everyone – globally – with OCD would have access to affordable, high-quality OCD treatment. That’s why we started Impulse Therapy to begin with; OCD treatment is too often expensive or otherwise inaccessible.
With that said, we understand that that ideal world is not yet a reality. Online mental health forums can’t replace professional therapy, but professional therapy isn’t within reach for everyone around the world. There may be financial barriers, or there may not be appropriate OCD treatment in your area. In these cases, online OCD forums are a free place to get some emotional support from your peers.
Even today, in this generation of mental health awareness, mental health stigma is still a huge societal issue. Research shows that stigma is one of the top reasons why people don’t get access to the mental health treatment they need.
We can carry a lot of internalized stigma, especially when we’re diagnosed with something like OCD. Awareness about more common mental illnesses like depression and anxiety is rising, but OCD continues to be an extremely misunderstood disorder. Jokes are constantly made at the expense of people with OCD, and it’s too easy to start feeling ashamed about having this disorder.
Online OCD forums help with that stigma. Having a supportive community of people who are going through the same thing can make us feel uplifted and brave; like we don’t need to be ashamed of our diagnosis. Hopefully, breaking through this stigma can empower us to seek the treatment we need.
The Risks of Online OCD Forums
Especially when you’re first diagnosed with OCD, it can feel wonderful to find an online community, like a forum, filled with people who understand your mental illness exactly. However, like with most anything in today’s world, online OCD forums don’t come without their risks. When not used properly, they can damage your mental health instead of helping it.
The most important thing to keep in mind is that the internet — including online forums and blogs, even this one — should never, ever be used as a replacement for appropriate medical treatment or advice. We at the Impulse Therapy blog strive to put out the most helpful and accurate OCD information out there — but still, reading the blog isn’t the same as getting treatment.
Although there is great information out there and it’s possible to connect with others that you wouldn’t have been able to before the internet came along, that doesn’t mean that the internet is a completely safe and helpful place. Always keep in mind that anybody can publish anything on the internet, and that people can pretend to be anyone they want behind a screen.
Here are some common risks of using online forums, including OCD forums, to be aware of.
Never give out identifying information online to anyone, especially in a public space like an online forum. Mom wasn’t totally wrong when she warned us never to talk to strangers on the internet. Although many people receive the emotional support they need from online forums, it’s best to be careful and not give out any personally identifying information online, like your full legal name, address, birth date, or phone number.
This goes without saying, but financially identifying information is particularly important to protect. You should never send things like your social security number or credit card information to anyone online, even if it’s to someone you know. Identity theft is a rising crime around the globe.
We know the internet is filled with warnings for young people about online predators, but we needed to say it, too. Despite prevalent warnings, online stalking and predators continue to be a problem, with 1 in 25 young people receiving an unwanted sexual advance online where the predator wanted to meet or have contact offline.
Well-Intentioned Bad Advice
Maybe the person you’re talking to isn’t an online predator, and really does have OCD like they say they do. Even so, they probably aren’t a medical practitioner — and almost certainly not one with expertise in OCD — so you shouldn’t take their advice as treatment.
A common example of this is providing reassurance to those with OCD that their obsessions aren’t true. Of course, this is done with the best intentions. When someone is facing such intense fear and pain, it’s a natural human reaction to want to calm them down and reassure them that they are not, in fact, a violent murderer, or whatever their obsession may revolve around.
However, remember that reassurance is your enemy if you have OCD. Even if it feels like a soothing balm for the wound of OCD in the moment, with time it starts burning and causing intense damage. That’s because seeking reassurance is a compulsion, and all compulsions keep you trapped in the OCD cycle.
Many online OCD forums, including the ones we’ve included on our list, have moderators who go through posts to make sure that people aren’t unintentionally making someone’s OCD worse. These moderators also sometimes post advice about OCD recovery themselves, which is usually safer to trust than anonymous posters’ advice.
If you aren’t sure if something that someone on a forum told you about OCD is legitimate, talk to a therapist or another OCD specialist.
Again, many online OCD forums have moderators that protect against unhelpful advice and trolls. With that said, sometimes problem-makers slip past them. Other forums don’t have moderators at all.
The term “internet troll” refers to anyone who intentionally starts arguments or offends people on the internet for fun.
For example, maybe you’ve posted on an OCD forum that you’re struggling with the obsession of whether or not you’re a murderer. The troll may respond that you probably are one, trying to intentionally cause you misery and discomfort. Needless to say, this may make your OCD and depression symptoms worse.
Trolls are relatively rare on mental health forums compared with other types of internet sites, but no place on the internet is completely free of them. Forums with active moderators are usually more likely to take care of troll problems quickly. If you’re going to use online OCD forums, you need to be able to distinguish between people who are genuinely trying to be supportive, and trolls who are intentionally trying to get a rise out of you.
Mental Health Triggers
Online OCD forums are — obviously — filled with people with OCD. That’s what makes them such supportive spaces for those of us with OCD; everyone interacting on OCD forums actually understands, deeply, what it’s like to live with this disorder. You don’t need to explain yourself over and over again, and there’s usually no judgment.
At the same time, that can also sometimes be difficult to navigate as well. Remember that not everyone with OCD is at the same place in their recovery journeys. You may have received some ERP treatment, be on medication, or at least understand what OCD is doing to your brain. Maybe you feel like you’ve finally gotten a handle on the worst of your symptoms.
Other people, who have recently received an OCD diagnosis and are just starting out on their recovery journey, may be in the thick of the worst of their OCD symptoms. They may describe their obsessive fears, in detail and publicly, on the forums. They may also talk about traumas they have experienced. This may understandably trigger you when you read about it, and remind you of the hardest times in your OCD journey.
Of course, it’s completely understandable to want to support people who are starting their recovery, especially when you’ve recovered. But understand that you’re not obligated to read any post that triggers you or makes your mental health worse. Make sure you take care of yourself first, and have coping tools ready to use if you come across anything that triggers you.
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The Most Popular Online OCD Forums
There are many different online OCD forums out there, and it can be hard to weed through them. Here are the most popular and well-known forums, with all the information you need to know about each one.
OCD UK is the UK’s biggest national organization specifically dedicated to OCD issues. Their forums are free for anybody in any country to use, although there is a paid members-only area as well. The OCD UK Forums’ volunteer moderators do an excellent job of making sure that inaccurate or offensive posts are removed.
International OCD Foundation (Health Unlocked Forum)
The International OCD Foundation, a world leader in OCD awareness, has partnered with Health Unlocked to start an online forum called My OCD Community. IOCDF is one of the most respected sources for OCD information, and this forum is moderated by both IOCDF and Health Unlocked. This is a trustworthy and reputable place to get OCD support.
NOCD is a mobile app that provides people with self-help support for OCD. On their app, there is a forum feature that allows app users to interact with and support each other. There are a few moderators, although the coverage isn’t 24/7. There’s also a way to mark your posts with a trigger warning.
Young people with OCD may benefit from having other young people to connect with. OCD Youth is affiliated with OCD Action, a UK-based OCD awareness organization. The discussion boards invite youth under the age of 25 to talk about what it’s like to live with OCD and to support each other. OCD Action also has its own forums for adults 18+.
How to Use Online OCD Forums
While each forum has its own set of rules, some general etiquette and guidelines can help you use OCD forums in the most helpful way possible. These guidelines will help you to create a positive forum experience for both you and others.
- Be kind. This shouldn’t need to be said — but sometimes, on the internet, it is. Even if you don’t agree with something someone has posted, always respond with kindness and respect. Never use offensive language, and understand that everyone on the forum is going through OCD — the pain of which you deeply understand.
- Be patient. Most forums have thousands of active members all over the world. Your post may not be responded to right away. We understand the desperation that can come with being in the thick of an OCD spike, but don’t get frustrated. Be patient, and resist the compulsive urge to post your question over and over again.
- Don’t seek or give reassurance. Remember, reassurance is the enemy of OCD recovery. Avoid posting on forums to seek reassurance that your obsessions aren’t true; remember that the reassurance will only work for a few minutes before your OCD starts screaming, but what if? Just as importantly, avoid giving reassurance as well. If you see someone is asking for reassurance, empathetically remind them of why it’s harmful.
- Don’t give advice that’s out of your scope. Stick to sharing your personal experience with OCD and recovery. If someone asks for medical advice (such as whether or not they should worry about a medication side effect), don’t try to answer the question unless you have a medical license. Encourage them to talk to a professional.
- Be careful of compulsive behavior. Anything can become a compulsion when you have OCD, including using online forums. Be mindful about your posting, and try to notice when it’s becoming a compulsive behavior. For example, if you start worrying that if you don’t check the forum for one day, you may not be there to help someone who’s suicidal (and therefore that person’s potential suicide would be your fault), that may be a sign that you’re obsessing.
- Use forums as a supplement to mental health treatment. If it’s possible for you, only use online OCD forums alongside evidence-based treatment provided by a licensed therapist specializing in OCD. Online forums can provide emotional support, but they can’t help you recover from OCD.
In addition to these guidelines, always follow each forum’s unique rules and guidelines to make sure that you don’t risk getting banned from the community.
Find Treatment for OCD
Online mental health forums have been found to help people feel supported and empowered to access the treatment they need without feeling the weight of shame or stigma. And that, to us, is the most powerful benefit of online OCD forums. Venting about your symptoms to people who deeply understand is comforting, and can often make the difference between a terrible day and an okay one.
However, at the end of the day, venting or online support won’t cure you of your OCD. And as good as it may feel, you deserve even more than the comfort that comes with the emotional support of an online forum. You deserve recovery from your OCD symptoms — to live a life free of OCD. And that kind of recovery is possible.
Many people have recovered from OCD using evidence-based treatment methods like Exposure and Response Prevention, antidepressant medications, and other alternative treatments like TMS therapy.
Impulse Therapy is here to support you every step of the way. Recovery is within your reach, and you’re not alone.