Parents of children and young adults with OCD have many questions they’d like to ask their kids about OCD, and we, the members of the Young Adult Special Interest Group, certainly have a number of things we’d like to ask our parents.
In this blog series, young adults with OCD answer some of the most common questions parents or loved ones have based on their own experiences!
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Disclaimer: all responses are based on personal lived experience rather than clinical training. This blog series is meant to provide insight into what one’s experience with OCD might be like and is in no way intended to serve as professional advice. For professional advice, please seek a trained and licensed clinician.
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Definitions
SIG: Special Interest Group
Exposure and Response Prevention or ERP: the “gold-standard” treatment for OCD, ERP is a type of cognitive behavioral therapy focused on exposing oneself to thoughts, feelings, or images that provoke anxiety which provoke anxiety and, after triggering this anxiety, not engaging in compensatory or compulsive behaviors.
Acceptance and Commitment Therapy or ACT: a form of cognitive behavioral therapy, sometimes used in conjunction with ERP for OCD, that uses acceptance and mindfulness skills along with behavioral changes to increase psychological flexibility.
Behavioral Activation: a therapy designed for treating mood disorders that encourages engaging in positive and enjoyable activities in order to lift one's mood.
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Anonymous: I have two pieces of advice for this:
First, it’s important to understand that there can be a lot of shame involved with OCD. Even young children might know that the compulsions they’re doing are irrational, and that can sometimes make them feel embarrassed - my own compulsive behaviors started when I was about five years old, and I was embarrassed about them even at that age. I unfortunately didn’t see a therapist until later in life, but I think that if I had seen one as a child, it would have helped immensely in dealing with those feelings of shame.
So my first piece of advice is to have your child speak with a therapist who specializes in OCD, if they aren’t already. If you have any way of connecting them with other kids who have OCD, that can be helpful as well. Even in my own experience as an adult connecting with other people who have OCD, I can say it makes a big difference in my self-confidence and comfort in opening up to see that I’m not the only one with this disorder and that what I’m going through is normal.
My second piece of advice is to be patient with your child if they don’t feel comfortable talking about their OCD yet outside of a therapy setting. In my own OCD journey, opening up to people was something I really needed to do at my own pace, when I was ready. And the people I’ve opened up to about it were the ones who I most felt would be nonjudgmental and supportive. You’re already doing the right thing by asking questions through a forum like this, and showing genuine care about what your child is going through. That sort of attitude is something that kids notice and remember, and in my view, will make them be more likely to open up to you about it when they’re ready.
Kyle: The short answer is - certainly not in my case. When my OCD was at its worst, I rarely talked to my parents, especially about OCD. And I think I was so reluctant to speak for a couple reasons. First, living with overwhelming OCD is terrifying and overwhelming and, in the midst of all that, I was just generally irritable. Second, I felt like when my parents tried to talk to me about OCD, they’d most often just point out compulsions and push me to work on them. My OCD didn’t like that and, because my OCD and I were intertwined then, I didn’t like it much either. Probably most importantly, though, I could feel in my parents voice how badly they wanted me to recover so, whenever we spoke about OCD, I just felt like I was letting them down. And that sucked.
As far as advice, despite what I said above, I do think parents should push their kids to do exposures. Or, at least, not let them off the hook if they try to avoid exposures. I’m eternally grateful to my parents for pushing me in that direction. I acknowledge that this is exceptionally hard, to be tough on your kid when they are suffering, but I would not be free from OCD today had it not been for my parents. Also, it would have been nice if my parents started any conversation by letting me know that they had seen me working hard, acknowledge any wins I had had that week, before talking about anything negative. This maybe would have made it all feel less disappointing.
Jacob: Finding an opportunity to discuss OCD can definitely be difficult for a variety of reasons, but it can also be rewarding as it can lead to a better connection. One of the most important things when figuring this out is making sure that it is done in an environment that is comfortable and considerate to those involved so that it can be a productive conversation. As far as when to do so, try a collaborative approach, meaning working with your child to find an appropriate opportunity to do so. Whether that’s planning out a day or time or setting up “meetings” solely dedicated to this discussion, it’s important to arrange any talks such that everyone knows what to expect and when. This also allows for preparation and proper expectation-setting, and places an emphasis on the value of the discussion.
Since this topic can bring about various emotions, I would not suggest trying to talk about it during or shortly after particularly distressing times or episodes of ruminations and compulsions. For me, I know that I did not like to be “interrupted”, and although it’s not great to encourage or “work-around” the compulsions, these were not times where I was necessarily open to change or in an emotional state where the discussion would be productive. Immediately after performing a compulsion, I simply wanted to avoid the topic of OCD, thus making any conversation unproductive even if it seemed like I was “open to a discussion”. Lastly, as much as planning a discussion can be beneficial, it’s also important to be cognizant of if the conversation becomes unproductive and be open to agreeing to adjust or find another opportunity as needed.
Kyle: For me, when to bring it up was complicated. And that’s mostly because when never felt like it came.
When my OCD was most severe, I never wanted to talk about it with my parents. I never wanted to talk about precisely what was going on in therapy, at school, or in my head for what I think are two main reasons: shame and fear. On shame, I always would avoid talking to my parents about OCD because speaking about it always made me feel like a failure. Our conversations always reminded me of all the things I wasn’t able to touch, all the exposures I wasn’t doing and, to some extent, all the ways I was letting my parents down. And that feeling persisted despite them explicitly telling me time and time again that they were not ashamed of me or disappointed in my effort in treatment - the shame was something insidious that no one but myself could address. On fear, I was also scared to talk to my parents about OCD because they pushed me to do exposures. Here is where it gets a little complicated. I, when my OCD was most powerful, did not want to confront it, thus I got upset and defensive and anxious when my parents encouraged me to do just this confronting. I say this part is complicated, though, because, in hindsight, I’m incredibly grateful to my parents for pushing me despite having been upset in the moment. I wouldn’t have recovered without them.
So, when to talk with your kid? Well, because talking to me was like pulling teeth, my parents and I set up a system where for 15 minutes a week, on Monday nights, we would talk about OCD. They could ask whatever questions they had and I had to fully answer. And outside of these 15 minutes, we wouldn’t talk about OCD. In this way, we reached some sort of compromise in which my parents got the information they needed, without a full-scale meltdown on my end (at least, not most of the time).
Anonymous: From my experience, there really was no “right” time to bring up OCD. As a young adult who has undergone lots of treatment, I can attest to the importance of communication and support from loved ones. When my parents approached me about the OCD, it was a relief to know that they were there to listen and help me through it. So my recommendation would be to trust your instincts as a parent and create a safe space for your child to express their thoughts and feelings to the extent they feel comfortable with. I was very open with my parents about many of my obsessions and compulsions but I know lots of others aren’t as open and that’s completely okay!
An important thing to note is that I would never discuss it when my anxiety was heightened. It wasn't the best time because my brain was so focused on what OCD was telling me that I couldn’t focus on the conversation my parents were having with me. Initiating the conversation with empathy and understanding will hopefully provide invaluable support on your child's journey toward freedom from their OCD!
Jacob: It’s worth stating that you want to limit reassurance. As reassurance-seeking can be quite sneaky, having to put your detective hat on as a parent to figure it out sometimes is important. Creative minds find creative ways around being obvious about reassurance seeking. For me, the main goal of reassurance was to obtain a “feeling” of comfort or satisfaction. With that in mind, I would suggest looking out for patterns in your child’s reaction to your responses. If there is a sudden change in attitude or demeanor, or inquiries, simply stop during a series of questions, these could be indicators that the child experienced some level of reassurance from your response. Desiring reassurance is often accompanied by the feeling of urgency, so if questions are asked in a time-sensitive manner or the interaction feels pressing, this again could be reassurance. Since it can be difficult to notice, it’s also worth asking your child if they are seeking reassurance with their questions, so that you can start to develop a better awareness. Something my parents would do is ask me what I think when I ask them a question. I didn’t like this because it was not what I wanted to hear, but it refocused my mind from fears or worries to reality and known truths in front of me, overall working to try to reframe my approach to the thoughts. Also, give yourself grace and compassion. We can be tricky and you’re not going to notice it all the time. Nobody’s perfect, as much as we may want to strive for it.
Anonymous: Just to make it clear, reassurance is just like another compulsion, which is why it's so important not to fall for it. It reinforces the OCD cycle. Luckily, there are ways to respond to reassurance-seeking questions that don’t provide any certainty and, in so doing, fight against reassurance. For example, instead of saying to your kid, 'That's not contaminated, it's clean, I'm 100% sure,' I found it helpful when my parents said things such as 'I know you are feeling some strong emotions, can you name them?' or 'I know you want reassurance about that, but we really don't know’ or ‘We can try something different this time, like not washing your hands.' Always communicate with compassion and empathy. Remember, sometimes kids will get frustrated with these types of answers, and they may engage in their compulsions. It's okay. No one has to (or will) progress through treatment perfectly - what matters is a general trend towards health!
Anonymous: In my personal journey, I went through many different stages of reassurance-seeking with my parents. At first, all my reassurance questions sounded like completely normal questions one would ask. My parents answered every question I would throw at them because they weren’t aware that the more reassurance I receive, the more likely I will be to ask more reassurance questions and the cycle will continue. It got to a point where these reassurance questions just consumed the entire day and my parents would keep answering the questions because they felt that they had no other choice to get through the day. After my parent’s received the psychoeducation about reassurance, they began to learn that they can tolerate the stress of not constantly giving reassurance knowing that it is helping their child find freedom from their OCD. Once my parents learned the basics of reassurance-seeking, their eyes and ears became more open to common reassurance-seeking questions.
The toughest part is the response to reassurance-seeking. In my journey, there was definitely a certain limit in the amount of types my parents were able to use certain responses, because I caught onto their answers, so it was important for them to switch it up.
The big two responses that I remember my parents using with me were, “I know this is OCD talking to me right now so I am not going to answer that question,” and then putting it back on me where they asked, “Is this a reassurance question?”
The most important thing to remember is that this is not easy for you or your child and you are all putting in the hard work. You both are doing what you can to gain freedom from OCD and always remember that there is hope!
Excelente recomendación
thank you! That was helpful
Wonderful!