by Marni L. Jacob, PhD, ABPP (President, OCD Central & South Florida) & Kyle King (IOCDF Advocate)
Friendships are a fundamental part of life, yet OCD can sometimes make it challenging for youth to navigate these important relationships. A common predicament for children and adolescents is determining whether to share information about having OCD with friends, as well as who, what, when, where, why, and how to share such information. This consideration is marked by questions such as: “Will my friends understand?” “Will they still want to be my friend?” “Will they pick on me?” and “Will I regret sharing my OCD with others?” The decision of whether or not to share an OCD diagnosis, and with whom, is a personal one, and there is no “one size fits all” answer. However, we have put together some tips to provide youth with guidance with this decision.
Deciding whether or not to share. As mentioned, the decision of whether or not to disclose your OCD is a personal choice; it can have positive outcomes, but may also come with challenges. There are some people who may wait to share their OCD with others until they are in a place of greater stability. Others may share it when they are struggling, so those people can be more understanding and can provide needed support. The National Alliance for Mental Health (NAMI) recommends that a good time to disclose your mental illness is “when you are well, when it serves a purpose, and/or when you’re ready.” Many people disclose their illness in an effort to obtain support from others, and it can be incredibly meaningful to have such support during a challenging time. Other benefits to sharing include reducing stigma and fostering acceptance of OCD and mental illness on a larger scale.
However, there are also realistic concerns with disclosing one’s OCD, such as experiencing rejection or judgments from others, which unfortunately may occur.
When making the decision of whether or not to disclose your OCD to friends, there are several questions that you can reflect on: 1) Do you feel like you could benefit from support and encouragement from your friends? 2) Do your symptoms cause problems with you socially (e.g., avoidance of certain activities, tardiness when making plans), such that it may be beneficial to clue your friends in to the truth about the real reasons for your difficulties? 3) Do you genuinely think it would be helpful for you to share your OCD, or are you being pressured into sharing your illness? 4) Are there reasons not to share your OCD, such as concerns that you will be labeled or discriminated against? 5) Are there cultural or religious factors to consider, such as whether there is more or less stigma of mental illness in your community?
If you are unsure whether or not to share your disorder with others, consider making a list of pros and cons. You can then reflect on this list to determine if the benefits of sharing outweigh the potential risks of doing so.
Deciding whom to tell. There are often different types of friends, and some friends may be more or less appropriate choices with whom to share your OCD. Some friends are those you socialize with, who make you laugh, and who are fun to be around. Other friends are those who you can be serious with and who you feel a real connection to; these are the best to tell about your OCD. If you are considering sharing with friends, it is recommended that you start with a close friend with whom you feel safe and secure, as it can be helpful to practice the conversation with someone who makes you feel comfortable.
Deciding what to share. There are two basic things you can share: the disorder itself, or the content of the disorder. That is, you can either share information about OCD, in general, with your friends, or get specific and share exactly what your OCD is about (e.g., your specific intrusive thoughts, specific rituals).
It is often easier to share general information about OCD first, rather than sharing your specific content, so speaking generally can be a great way to start. You also don’t have to share everything, as there may be aspects of your OCD that feel more personal than others. If a friend asks questions, you can simply respond by letting them know that you are not comfortable discussing more specific details. With anything you do share, it is recommended to share information gradually, as then you can consider their response to help guide how much more you are comfortable sharing with them. Whatever you choose to share, though, emphasize that you are going through something really hard — that is what a real friend will care about.
Have reasonable expectations of how people will respond. It is normal to feel nervous about talking to your friends about your OCD. In considering potential responses, it seems that there are three basic ways a friend can respond to learning that you have OCD: positively, negatively, or neutrally. Ideally, a friend will respond positively and with words of support. If they do respond positively, let them know that you appreciate their positive response and support. Sometimes, it can feel disappointing if you receive a neutral response (e.g., a friend hearing you out, but then jumping to another random topic). Although this may feel like a negative response, it may be helpful for those with OCD to reframe neutral responses from friends. For example, a neutral response may mean that the friend does not think of you differently because of your OCD; to them, you’re the same exact person. In this way, a neutral response may just mean that your friend accepts you for who you are, which can be very comforting to know.
It is also important to be prepared for a negative response. If you receive a negative or an unsupportive response (e.g., a friend who makes fun of you), it may be reasonable for you to consider whether this person is really someone you want around you. Moreover, if they don’t accept you because of your OCD, it is probably better to find that out sooner, rather than later, as this may be a friendship that you may no longer want to put as much effort into.
Be prepared that your friends may not understand OCD. OCD is a mental health disorder that is often marked by irrational and bizarre thoughts and behaviors. Accordingly, many people have trouble understanding the disorder. You don’t need your friends to be OCD experts; rather, just a source or support. Although your friends may not truly get OCD, most people have some understanding of what suffering and anxiety feel like. Given this, if you simply communicate that you are dealing with something really hard, it is likely that your friends will be able to understand on some level, and hopefully, they will be supportive.
It is also possible that your friends may respond insensitively, or in an ignorant manner. If that occurs, we recommend that you consider your friend’s intentions before you reply back to them. Are they trying to be insensitive on purpose to make you feel bad, or might it just be that they don’t really understand OCD and how debilitating it can be? If you think that your friend’s intentions are good, you could use the discussion as an opportunity to inform them what OCD really is, so that they can best support you.
Let your friends know what you want them to do with any information you share with them. Hopefully, your friends will feel honored that you have chosen to share such personal information with them. Given that, many friends will naturally want to help in some way, so it is useful to give them some guidance on what they can do. Most people who disclose their OCD may do so for some purpose, so it is helpful to communicate to friends why you are telling them. Is it so they can support you if you are struggling? Do you want your friends to point it out if they think you are being bossed around by your OCD? Do you want them to help distract you by encouraging a fun activity if they think you are anxious? Consider what you are needing and/or wanting from your friends, and share that with them so they know how to best help you. You may not want their input or advice, as you may simply just want them to listen. Explain to them what you do and do not want them to do, since they may have good intentions to help, but you likely do not want them to be your OCD therapist. Additionally, if you want your friends to keep things between just you and them, make sure that is clear to them, so that they don’t go and share your personal information with others.
Be thoughtful about how you reference your OCD. For some, use of self-deprecating humor may help lighten the mood when discussing a serious mental health disorder. However, if you are self-deprecating or refer to yourself as a “weirdo,” it might make your friends think it is okay to do the same. Consider such things when discussing your OCD with friends, as your friends may look to you as a model for what is okay and not okay to do.
To share or not to share … on social media. Some people have made the choice to share their struggles publicly on social media. For some individuals, it can be therapeutic to share one’s story publicly. It may also allow the opportunity to connect with others who may have similar experiences. Further, the courage you show in sharing your struggles may serve as an inspiration to others, and may even motivate other affected individuals to seek out help.
Although there may be many positives that could come from sharing your story publicly, it is also important to consider potential negative outcomes. Sharing information about your OCD on social media removes your ability to pick and choose who learns such intimate details about you, which increases the chance of negative reactions. It is also pretty well known that any information you post online will be there indefinitely, so it is important to consider whether you’d want your comments/posts to follow you around forever. Although you may be motivated to share such information when you are young, you may feel differently when you are older, such as when you are applying to jobs, or if you start a family. Be thoughtful about sharing any personal information online for these reasons.
Given that there may be pros and cons, before sharing on social media, we recommend engaging in self-reflection about why you want to share such personal information via this medium, and whether you feel capable of handling any reactions you may receive. Let’s face it; you likely have enough going on in your head already due to your OCD — you don’t need more noise. If you are hoping to connect with others and give back to the OCD community, there may be other methods to achieve these aims (e.g., serving as an IOCDF Advocate, attending an IOCDF conference), while minimizing the chance of receiving negativity in response to any social media posts. Accordingly, decisions about sharing publicly on social media should be made thoughtfully, and not impulsively. Once the toothpaste is out of the tube, it can’t be put back in!
Consider resources that may be helpful if you decide to share. If you have chosen to disclose your OCD to close friends, there are many resources that you could use to help your friends better understand what you are going through. For instance, you could invite them over to watch a documentary about OCD, such as Unstuck: An OCD Kids Movie. You could direct them to learn more about OCD by checking out the resources on iocdf.org. You could attend an event on OCD awareness and ask them to join you.
In summary, there may be different times in your life when it may be more or less beneficial to disclose your mental illness to friends, and that may vary based on different reasons. So, in deciding whether or not to share, consider what your purpose for sharing is, and whether or not you are in a place to handle the positive and/or negative responses you may receive.