This article is the first in a series on youth mental health co-written by youth development researcher Kathryn Bates and young people with experience of mental health conditions. The messages and formats of each article were led by the youth co-writers, and draw on both lived experiences and evidence from the research.

Content warning: This article mentions self-harm.

Obsessive compulsive disorder (OCD) affects around 3% of children and adolescents worldwide. An individual with OCD typically experiences obsessions (such as repeated and intrusive urges) and compulsions (behaviours in response to obsessions) that can be debilitating. Tabby Podger is a 20-year-old medical student with OCD. Tabby talks with Kathryn about navigating living with OCD as a teen, and what caregivers and schools can do to help young people with OCD. 

Kathryn Bates: What is your experience with OCD?

Tabby Podger: My experience of OCD started when I was around 11 years old, when I moved to boarding school and was struggling with the independence. Before then, I had internalised a lot of my emotions because I was afraid that expressing them would mean I was an attention seeker. I was suppressing a lot of feelings – a therapist later likened it to holding a beach ball underwater. The more you push down, the more it will push up.

I started out with really low mood, which escalated into self-harm and disordered eating. This made my worries about being a bad person and an attention seeker worse. That was when the compulsions started; I began obsessively researching every mental illness under the sun. When I read or heard something, I’d repeat it in my head until it made sense to me. I felt that I needed to be consistent with my thoughts and behaviours because if I wasn’t, I must be faking it. For example, if I had to leave class one day because I was so stressed out, was I faking it if I felt okay the next time I went to class? These little things, the compulsions, were just building and building.  

I was in counselling for two years before I got a diagnosis at around 13 years old. The counselling didn’t really address my OCD because I didn’t talk about my underlying fear of being an attention seeker. I thought I actually was just looking for attention, and I was frightened that the counsellor would think so too. We weren’t getting anywhere, so I was referred to a psychiatrist. At the time, after all my research, I thought I had ADHD because I felt the need to repeat things in my head all the time. But when I was diagnosed with OCD I was confused. All I knew about OCD had to do with obsessively tidying or washing your hands, and that wasn’t my experience. There is so much stigma around OCD; perhaps if I’d known then that there was more to it, I would have understood it better and got help sooner.

“There is so much stigma around OCD; perhaps if I’d known then that there was more to it, I would have understood it better and got help sooner.”

But the more I learned about it, the more it started to make sense. It was really nice for me because I had spent so long thinking, what the hell is wrong with me? I was so low because all these thoughts made me feel guilty about myself. Having that answer really helped me for a little bit – but then it got much worse.

After I got the diagnosis, I went back to my counsellor, and we started OCD-targeted work. When you read or hear about other compulsions, your OCD can latch onto that. My obsessive research dug up a whole host of things for OCD to fixate on. The main thing was contamination. I wasn’t necessarily afraid of getting sick, it was more a feeling of unease and anxiety knowing that I was dirty. My school was really accommodating. For about a year I wore gloves 24/7, I wouldn’t touch anything, I couldn’t eat with a knife and fork, sometimes I couldn’t eat at all.

Eventually, when I was about 14 years old, the school asked me to leave because I wasn’t able to go to class, and they couldn’t help me. I spent about 6 months at home, struggling to leave the house or do anything. Every waking moment was filled with obsessions and compulsions. Everything I said and did was carefully planned out to accommodate my OCD. Eventually, I was told that if I didn’t go to school, my parents would be fined. There was then a rush to get me into the local school, although I wasn’t well enough. I didn’t cope very well there, and my OCD was getting worse and worse.

Luckily, I got a place on the Maudsley OCD specialist treatment service when I was 16, and I received treatment for a year and a half. Things were slowly improving as I learned that I could actually fight my OCD. However, it was a slow journey. I did my GCSEs in hospital and then went back to school for sixth form. I had always managed quite well in school, but when I started studying for my A levels, I found the work increasingly challenging and didn’t know how to deal with the stress of not performing well, which led to a relapse of my OCD. I ended up being admitted to a psychiatric hospital. One week after I was discharged, we went into lockdown because of the pandemic, so I never went back to school. I did my A levels and now I’m at university in my third year studying medicine. So that’s the story.

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KB: Wow, that’s extremely impressive that you’re now studying medicine at university, even though you didn’t go back to school. Thank you for sharing your experience. You mentioned that your school was accommodating for a time, for example letting you wear gloves. What did you find helpful at that stage? And what do you think you needed from the school that you weren’t given?

TP: At that stage, therapy was so important, but I also needed the school to be supportive. Some staff made me feel comfortable, and some students were really accommodating, too. I would see the nurse in the medical centre when I came out of class. It was really nice to have that safe place. I could talk to the staff and distract myself. I liked that they tried to encourage me to go back to class. Even if I said no, they would still encourage me, but they wouldn’t push me.

I had a very unhelpful interaction with one teacher. When I first started struggling with my mental health, I spoke to a friend about it. She told a teacher, which was the right thing to do, but his response was to take me aside and say, “An 11-year-old should not know the term self-harm; don’t talk to anyone about it. If you really have to talk to someone, I guess you can talk to me.” I remember thinking at the time – okay, 11-year-olds shouldn’t know about these things, but this is what I’m living through. And that was a reason why I shut people out. I had thought I was in a safe place where I could express my emotions, but suddenly I was isolated again. I sometimes think if he’d offered to get me help or supported me at that time, things might have been different.

“Adults need to look at children’s experiences and treat them in a way that meets their needs.”

KB: It sounds like you felt like you were being judged for being an 11-year-old who was struggling with their mental health.

TP: I appreciate his concern for another child hearing about those things, but I’d already got to that stage, and I needed to talk about it. Adults need to look at children’s experiences and treat them in a way that meets their needs. They certainly shouldn’t be punishing young people with mental health conditions. This is what it felt like for me at school, like when I was kicked out. 

KB: What would you say to parents who want to support young people with OCD?

TP: I wasn’t very good at communicating with my parents; they often didn’t know there was a problem until it got really bad, like when I left boarding school. Education for my parents was a part of my later specialist treatment, and my experience with them drastically improved after that. A young person might not want to talk to their parents because they don’t understand. Obviously, parents are humans, they can’t know everything, but they should prioritise learning. The way that parents respond to compulsions is also key. Getting told off for compulsions can make young people withdraw even more because they don’t feel they have a safe space.

“The way that parents respond to compulsions is also key.”

KB: Should parents and caregivers allow young people to give in to compulsions in order to make them feel comfortable?

TP: In therapy, I was taught that no one should give in to compulsions. But if the young person is not actively in therapy, with support for the family, I think this view can be quite dangerous. When I was told off for wearing gloves, it felt like an attack and made me feel unsafe. It was counterproductive. These behaviours do need to be cut out, but the timing is really important. There needs to be an open and educated conversation about how everyone can support each other. When someone else engages in compulsive behaviour, it can reinforce a person’s obsessions and make OCD grow stronger. However, stopping all compulsions at once can cause anxiety, and may be too much for the young person to handle.

KB: So it’s about creating a safe space so the young person can work towards eliminating their compulsions, rather than hiding them, which makes it worse?

TP: Yes, exactly. The safe space is so important. I compare it to jumping in the sea with sharks. You believe that what you’re worried about is 100% going to happen, and it’s absolutely terrifying. No one would want to jump into the sea with sharks just because someone else said it’s fine to do so.

Resisting OCD is very difficult and can cause intense anxiety. When I am in that heightened state of anxiety, I feel very vulnerable. I don’t want to be in an unsafe place or with people I don’t feel completely safe with, and that can lead to withdrawal and isolation. Creating a safe space makes it easier for young people to come for help when they are struggling, and it may help them feel safe enough to start fighting OCD.

KB: How can teachers support young people with OCD?

TP: A teacher’s understanding of mental health conditions is so important. Out of all the people I talk to about OCD, only about 1 in 100 understands what it actually is. And there is such a strong stigma around OCD.

Schools should find a balance between being a safe space and a structured environment with rules. When I felt anxious, I needed the structure at school to help me cope.

“Schools should find a balance between being a safe space and a structured environment with rules.”

KB: It sounds like encouragement from teachers can be reassuring – it’s a way for them to let you know that they have your best interests at heart and that they’re concerned for your welfare.

TP: Definitely. Schools also need to make sure that it is not just the wellbeing team who are educated on supporting mental health; all members of staff need to know how to respond. If a young person trusts and reaches out to a teacher, the teacher needs to be ready to respond.

A parent once complained to me that their child with OCD had no empathy. I think there needs to be patience with those with OCD; it’s not that we have no empathy, it’s that we are sometimes so consumed with our obsessions and compulsions that we cannot think of anything else.

My message to parents and schools is this: Please be patient and don’t give up. If your child is lashing out at you, it is not because they don’t love you but because they are really struggling. Try not to feel disheartened. Listen to the young person and always keep trying to support them. Recovery is possible; I can now say that I have fully recovered. When I was at my worst – when I couldn’t speak, I couldn’t walk, I couldn’t eat, I was completely disabled – I never thought I would recover. But it is possible, and I’ve met so many amazing people with stories like mine who have recovered. I’ve been told it is one of the most treatable mental health conditions. With the right treatment and in the right environment, young people can get better and live a life worth living, even if it sometimes feels impossible.

Resources from Tabby

YoungMinds: A leading charity in the UK fighting for children’s and young people’s mental health.

OCD Action: The UK’s largest OCD charity, with a really good helpline for carers.

OCD-UK: Advice, information, and support services for those affected by OCD.

OCD is not me: A video made by the team at Maudsley OCD service which clearly describes OCD and gives the parents’ perspective.

Recommendations from the research and clinic

How to spot OCD symptoms: A common misconception about OCD is that it is only about feeling unclean. According to the Royal College of Psychiatrists, different people can have different obsessions. While some obsessions involve a fear of being unclean or spreading disease, others relate to anxiety about getting hurt or hurting someone else, something bad happening, or contracting an illness. Compulsions can then arise as individuals feel overwhelmed by these obsessions and resort to compulsive behaviour to solve the issue and stop the obsessions.

Listen without judgment and seek professional help: As Tabby explains, it is important to create a safe space where young people can be themselves and tackle their OCD. The YoungMinds charity recommends listening to young people talk about their symptoms without judgement and reminding them that OCD is a medical condition and not their fault. Encourage young people to seek professional support, first by discussing the issue with their doctor or reaching out to mental health helplines. 

OCD is more common in neurodivergent young people: Autistic individuals and young people with attention-deficit/hyperactivity disorder (ADHD) are more likely to develop OCD than those without autism or ADHD. Check in with neurodivergent young people with OCD to ensure they are getting the right support for their mental health symptoms.

Footnotes

Tabby Podger is a 20-year-old medical student with OCD. Tabby is passionate about sharing their experiences and helping educators and caregivers support young people with OCD.

This interview has been edited for clarity.

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