What Are the Risks of Using Social Media Support Groups for OCD and Related Disorders?

What you need to know

• Unmoderated social media support groups for OCD can have both benefits and risks
• People with more barriers to treatment and less offline support are more likely to have negative experiences in these groups
• Common issues include misinformation, comparing oneself to others, and feeling hopeless about recovery
• It’s important to balance online peer support with professional treatment when possible

The rise of social media support groups

Social media has become a major part of how people communicate and find information, including about mental health. For people dealing with obsessive-compulsive disorder (OCD) and related conditions, social media platforms like Facebook and Reddit offer peer support groups where they can connect with others who understand their experiences.

These online groups have some advantages over in-person support groups. They’re accessible 24/7 from anywhere with internet access. Users can remain anonymous if they choose. And people can engage as much or as little as they want - from just reading others’ posts to actively sharing their own stories and advice.

However, unlike support groups run by mental health organizations, most social media groups for OCD are created and managed by individuals with the condition rather than trained professionals. This lack of moderation can lead to both benefits and risks for users.

Studying the downsides of social media support

While previous research has looked at the positives of online peer support for various health conditions, less was known about potential negative experiences - especially for people with OCD and related disorders.

To investigate this, researchers surveyed 90 people who had used social media support groups for conditions like OCD, hair-pulling disorder (trichotillomania), and skin-picking disorder. They asked about participants’ experiences in these groups and analyzed what factors were linked to having more negative experiences.

Who is most at risk for negative experiences?

The study found two main factors that predicted whether someone was more likely to have negative experiences in OCD-related social media support groups:

1. More barriers to getting professional treatment
2. Less social support from people in their offline life

In other words, people who had a harder time accessing therapy or other formal treatment, and those who felt less supported by friends and family, tended to report more downsides to using the online groups.

This suggests that relying heavily on social media support, without balancing it with professional help and in-person relationships, may put people at higher risk of negative experiences online.

Interestingly, the severity of someone’s OCD symptoms didn’t predict negative experiences. Neither did how they used the groups (e.g. posting vs. just reading) or how they felt about the relationships they formed there.

Common negative experiences reported

When asked to describe downsides they’d encountered in OCD-related social media groups, participants mentioned several recurring issues:

Confronting content

Some users found it upsetting or “triggering” to read graphic descriptions of others’ OCD symptoms or see photos related to conditions like hair-pulling. While shared experiences can create a sense of community, they can also be distressing for some.

Misinformation

Without professional moderation, inaccurate medical information or ineffective “treatments” can spread in these groups. Some participants reported confusion about which advice to trust.

Preoccupation with symptoms

Reading extensively about OCD sometimes led people to think about their own symptoms more, potentially worsening their condition. As one participant put it, “thinking about it makes it worse at times.”

Social comparison

Seeing others’ experiences sometimes made people feel worse about their own situation. For instance, one person said reading about severe cases made them feel ashamed for struggling with what seemed like a milder form of OCD.

Hopelessness about recovery

Being exposed to many people dealing with long-term OCD made some users feel discouraged about their own chances of getting better. One described feeling “discouraged about permanent progress or remission.”

The role of treatment barriers

The finding that treatment barriers predicted negative online experiences highlights some important issues. People often turn to social media support groups when they have trouble accessing professional help - whether due to cost, lack of local specialists, stigma, or other reasons.

While online peer support can be valuable, it may not be enough on its own for many people with OCD. Without the guidance of a mental health professional, users may be more vulnerable to misinformation or unhelpful social comparisons in these groups. They may also lack the tools to cope with distressing content they encounter.

This doesn’t mean people shouldn’t use social media support groups if they can’t access formal treatment. But it does suggest a need for caution and finding ways to make professional help more accessible alongside online peer support.

The importance of offline relationships

The study also found that having less social support from people in one’s offline life predicted more negative experiences in online groups. This points to the continued importance of in-person relationships, even in our digital age.

Friends, family, and other offline connections can provide perspective and emotional support that complements what people get from online peers. They may be able to notice if someone seems to be ruminating more after spending time in OCD forums, for instance. Offline supports can also encourage people to seek professional help when needed.

For those who feel isolated in their daily lives, online groups may become their primary social outlet. While this can be better than no support at all, relying too heavily on virtual connections may increase vulnerability to some of the downsides mentioned earlier.

Balancing the benefits and risks

It’s important to note that most participants in this study reported at least some benefits from using social media support groups for OCD, even if they also had negative experiences. Common positives included:

• Feeling less alone in their struggles
• Getting practical tips for managing symptoms
• Finding hope and inspiration from others’ recovery stories
• Raising awareness and fighting stigma around OCD

The goal isn’t to discourage use of these online communities, but rather to help people use them in a balanced, intentional way that enhances rather than replaces other forms of support.

Recommendations for safer social media support

Based on the study’s findings, here are some suggestions for getting the most out of OCD-related social media groups while minimizing potential downsides:

• Use groups to complement, not replace, professional treatment when possible
• Be cautious about medical advice shared online - check with a doctor before making changes
• Set time limits to avoid excessive rumination about symptoms
• Take breaks if you notice groups are increasing your anxiety or preoccupation with OCD
• Maintain offline relationships and activities to keep perspective
• Remember that recovery looks different for everyone - try not to compare your journey to others’
• If you notice repeated negative effects from using groups, consider talking to a therapist about healthier ways to find support

Looking to the future

The researchers call for more studies on both the benefits and risks of social media support groups for OCD and related disorders. They suggest collaborating with people who use these groups to develop guidelines and safeguards that preserve the positives while reducing potential harms.

There may also be opportunities for mental health professionals and organizations to partner with existing social media communities. For instance, they could offer expert Q&As or share evidence-based resources without taking away the peer-led nature of the groups.

Ultimately, online peer support is likely to remain an important resource for many people with OCD. The goal is to make it as safe and helpful as possible, as part of a holistic approach to living with and recovering from these challenging conditions.

Conclusions

• Unmoderated social media groups can be helpful but also risky for people with OCD, especially those facing barriers to professional treatment
• Common downsides include misinformation, symptom preoccupation, and discouragement about recovery
• Balancing online peer support with professional help and offline relationships is ideal when possible
• More research and collaboration is needed to maximize benefits and reduce risks of these groups