How to Find your OCD Community
Updated: Sep 19
I speak a lot about making sure you find your tribe in OCD recovery. Whether that’s people who have been through the same as you who you meet online, whether it’s peers at an OCD support group or whether it’s being part of a community who all follow the same really helpful OCD professional, there are loads of options for us.
First, I just want to clarify what I mean by ‘community.’ I have never found just the one community that ticks every box for me and I’ve been involved in the world of OCD advocacy for a long time now. I have yet to find the ‘perfect’ OCD community because, honestly, it doesn’t exist – OCD is tough, any group to do with it is going to come with some difficult conversations. Elements of problem saving. But there are ways in which you can tailor-make your tribe and that’s what I’ll talk about here, as well as covering the things to keep an eye out for.
In fact, that’s where I’m going to start. I’m going to talk about the pit falls of some of the OCD communities online so you know how to protect yourself and adjust how you are looking for support. If you want to skip down to the next section, please click here!
Insert dramatic music here! :-)
Find your OCD community through FACEBOOK groups
(I’ve called this Facebook OCD groups but really it could be about any online OCD group or forum.)
As someone who had tried to monitor an online group space for OCD I can say with no uncertainty, that it is a really tough job. Groups can be wonderful because it gives us a chance to meet others who have been through the same as us. It is incredibly validating. OCD is isolating, it makes you believe you’re the only person on the planet with that set of symptoms, and to find others who have been through the same is lifechanging. In terms of my own recovery, it made a huge difference. However, and this is a big HOWEVER, by our very nature, we often look for reassurance. Even with the best will in the world, that early validation can turn into reassurance seeking which we know is a big ol’ compulsion. For more information on sneaky compulsions and how to spot compulsions please check out this blog here.
Apart from this one foray into Facebook OCD groups – which didn’t last long – I have never been a part of one, even when I was at my lowest. That is a healthy self-care choice for me. They’re way too triggering and encourage me to engage in unhelpful behaviors. You may feel very differently of course, but just be mindful to check in with yourself about how they are making you feel.
How is the space monitored?
Another problem with groups like this is how do you monitor them? If there is a lot of reassurance seeking – which often goes against the rules of the group – how do you politely monitor it and adjust what someone writes. I’ve heard stories of how people on OCD groups and specific apps have been spoken to in a way that isn’t overly kind for ‘breaking’ the rules and asking for reassurance. Again, I don’t really blame anyone here, it’s so hard to monitor a group like this but also so important that members are looked after. And of course, we mustn’t forget that people who run the group often have OCD too, are volunteers and doing it on top of a lot of other responsibilities. It’s a complicated mix.
When you’re part of an online OCD group, the chances are people will explain their intrusive thoughts in details. This happens quite a lot. Even someone without OCD would find that a tough read, particularly if it’s one, after the other, after the other. If you have OCD, there’s quite a high likelihood the content in these groups is going to make you feel low and anxious. Very, very anxious. And who needs that right?
Know your types of social media…
… the communities differ very much between them.
The OCD community on Instagram tends to be fun, open, caring and supportive.
Some excellent accounts to follow are.
This list is by no means exhaustive and most of these people above have websites and spaces on other platforms too but I’m focusing on the Instagram ones because I think they’re the most positive.
The OCD community of Twitter seems to fall into two big categories. There’s the big-hearted community and the slightly… er… ‘battle-weary’ community. I stay clear of this second lot. I find them quick to call out, to shame others and focused on the negative. I understand why, it’s just not helpful for me or my recovery. Here, the mute button is my friend. The rest of the community is lovely. Have a hunt about.
Just something else to be careful about, Twitter seems to house the most amount of UK based OCD therapists. Whilst most are awesome, some can behave in a way that doesn't always seem to align with being a therapist. They’re people too right, but considering their role, and the fact they treat people like me, I’d prefer to keep my distance. never meet your heroes right? You’ll know what feels right for you. Set boundaries and stick to them. Being careful about who you follow online is an important self-care decision.
Great account to follow on Twitter:
@lilybaileyuk – Lily hosts #OCDtalkhour every wed 7pm UK time.
I’m not going to list accounts from Facebook because the best ones have been mentioned above in the Instagram section. The Facebook algorithm is making it hard for the OCD community to work successfully at the minute through pages, so another social media platform might be a good idea. Also please remember to be careful around OCD groups.
Finding individual people
Some of the best and most helpful relationships that I’ve built in the OCD community have been one on one relationships. People have either messaged me. Or I’ve messaged them. We’ve got chatting in the comment sections under posts. We have to be mindful of making sure we keep ourselves safe online but some of these relationships have been deal changers for me. From strangers to nattering on social media, through to mates chatting over WhatsApp, to meeting up in person (again, please be very careful here!) You can make some wonderful relationships whether online or in real life. Just remember to set boundaries and keep to them.
A great way of getting to meet people in real life is through in-person support groups. Covid ruined this for a long time but groups are staring to open up again. OCD Action has the most incredible list of support groups and I've heard from others that they are so friendly and helpful. You can check them out here!
In the Future
I’m currently working with the University of Bath to create an app for relapse prevention in OCD. Part of the app will include some form of peer support element. So, although this won’t be around for a while, it’s good to know things like this are in the pipeline.
Keep an eye out for events in real life.
This Saturday, I’m speaking at the OCD in Society conference. Lily Bailey will be there, so will Laura Johnson from OCD Doodles, Chrissie Hodges and Stuart Ralph from The OCD Stories. The night before the event there is an informal meet up in West London. These are amazing opportunities to meet other people – and if it’s at a conference you’ll also learn loads too and meet other people with similar experiences to your in the audience. Covid has meant that lots of in-person events have been moved to online but things are starting to open up again now and it’s a great time to meet other people.
Taking part in research and steering groups
You'll often see requests on social media asking for people to take part in steering groups or group research. These can be a wonderful way of meeting people who have been through similar to you. Make sure you find these requests through a respected charity such as OCD Action and OCD UK. They are experienced at checking that the ethical guidelines have been followed by researchers. I've recently taken part in a steering group with the University of Bath and we are all now in a watts app group and are close friends. It's fantastic to have their support. Again, be sure to protect yourself when considering taking part in something like this. Research and steering groups can be wonderful but they can also be incredibly triggering, the researchers should make it very clear about:
the sorts of questions they'll be asking,
the information they'll be collecting,
what they will be doing with that information they collect from you and who they will be sharing it with,
the fact you can step away at any time,
who to contact if you are feeling triggered by the sessions.
Again, this list is not exhaustive, researchers have a big responsibility to protect you. You can find out more information about this from OCD Action or OCD UK.
Okay, I think that’s about it from me. If you have any suggestions to add please let me know and I’ll add them here.
For additional reading please check out my blog on using advocates. It really is so important we know how to look after ourselves on-line and part of that is knowing who to follow and when to step back.
Loads of love everyone,
Until the next time,
Catherine x x
PS. I chose to focus specifically on the OCD community here but I know a lot of us are managing more than one condition. Remember to check out supportive communities for those too. Also there are some excellent generic mental health support groups out there. Bryony Gordon's Mental Health Mates have groups that go for walks and chats nationally, and GP's are starting to recommend groups like this to people under the term social prescribing so keep an eye out for that. Social prescribing is providing people with social networks to support their mental health. You could find a sports, gardening, walking, volunteering, craft, or any other helpful group, in your local area. Try to google it or ask your GP.