I was diagnosed with OCD at 9 – by 13 I couldn’t leave the house

It was like a switch flicked on in my head and I had an overwhelming fear of being contaminated by something (Picture: Sophie Goldstone)

‘What has been touching me?’

That’s all I could think about at school, aged 12. Not the lessons, but what was contaminating me at any given moment. 

About who and what I’d touched, and how long it was until home time when I could finally shower.

It wasn’t the start of my OCD symptoms, by any means. Obsessive Compulsive Disorder is a mental health condition where a person has obsessive, intrusive, unwanted thoughts and carries out compulsive behaviours in order to reduce anxiety from these thoughts.

But the release of anxiety is short lived. When the next intrusive thought comes, the compulsions and rituals start all over again.

My parents have since told me they saw signs of ritualistic behaviour from the age of four, but hoped I’d grow out of it.

I remember being on holiday when I was nine years old and struggling to place a bowl on the table correctly. It didn’t feel right, so I kept picking it back up, and trying to put it down again in a way that felt perfect. I couldn’t do it, and ended up asking my parents for help.

After seeking medical advice, my parents were told by my GP that it’s not common for youngsters with OCD to ask for help – as they usually suffer in silence. They don’t often understand what is happening to them.

I can’t remember much from that time, but by nine, I’d been diagnosed with OCD. At such a young age, I was visiting a psychologist, and having cognitive behavioural therapy (CBT) – a type of talking therapy that can help manage your thoughts and behaviour.

I didn’t want my school life ‘contaminating’, as such, my home and personal space (Picture: Sophie Goldstone)

My mum used to tell me it looked like I had 201 things ticking around in my head at any given moment, but everything seemed to change after I went to a soft play party. It was the trigger that sparked my fear of being cross-contaminated. 

My mum’s since told me that, once I got home from that party, I was quieter than normal – I took my coat off, placed it on a chair and refused to touch it again. 

Even the clothes I wore that day, or towels I used to dry myself down after showering, never got touched again, even after they’d been washed – for fear of cross-contamination, I can only imagine.

It was like a switch flicked on in my head and I had an overwhelming fear of being contaminated by something. I couldn’t see it, it was a feeling – but so overpowering that it was all I could think of and therefore didn’t want to touch anything that, in my mind, had come into contact with this contamination.

For years, I could manage my symptoms with coping mechanisms, therapy and help from CAMHS, the Child and Adolescent Mental Health Services. Eventually, my parents thought they were under control.

But, when I joined high school, the worries escalated – feeling more uncomfortable than ever before.

With my OCD, I never had intrusive thoughts, like: ‘If I don’t do this, my parents will die’ – which is a common form of the illness. Instead, the worries were about being contaminated, a feeling of ‘not quite right’ and ‘icky’.

I struggled through year seven, but it spiralled out of control the following year.

I didn’t want my school life ‘contaminating’ my home and personal space. 

I was determined to get better, to live the life that a teenager should

Once I’d finished school, I’d strip my school uniform off at the door and shower for five hours. Making sure I didn’t touch my clothes again, or the towels I’d used. I tried to separate the contamination from school, I felt like I had, from my bedroom – my personal space.

But, in the end, my world began to get smaller and smaller as I made more connections with my personal things and school.

I couldn’t wear the same clothes on a school day and home day – I had separate clothes I would put on after school that I wouldn’t wear on the weekends. I also couldn’t touch any school work on the weekend. There were certain rooms in my house I could only go in on a school day and vice versa on a ‘home’ day. The anxiety I felt was overwhelming.

I ended up feeling like I couldn’t go into my bedroom anymore, and started living in a room on my own downstairs. I stopped going to school as I was so exhausted from showering until the early hours – sometimes I’d be up washing until 5am.

I didn’t even see my dad or brother for a number of months, either, for fear of being contaminated. Only my mum could come into the room downstairs that I was in – at a distance.

I didn’t realise how hard this was for my dad and brother because at the time I was so consumed with the fear of contamination and that was all I could think of.

I hardly slept, hardly ate, and hardly moved from one spot on the sofa that I believed wasn’t contaminated. I slept there, too, and restricted my eating and drinking so I wouldn’t have to use the toilet much.

My world and I were shrinking – I was only 13.

I was getting worse, and no amount of therapy or medication was helping me. It was exhausting, and my anxiety was off the scale.

In October 2016, I was referred to the National and Specialist OCD Clinic at The Maudsley Hospital NHS Trust in South London for the specialist treatment I needed, but I had little hope. 

After an initial assessment in the clinic, I was put on the waiting list for six months before starting treatment.

However after the first few sessions it was too hard to leave my house to make the journey to the hospital so, the Maudsley tailored a treatment plan for me and my needs. I had weekly online sessions for the first few months until I was strong enough to go to the clinic.

The first few weeks of treatment were good, as I learned from clinical psychologists exactly what I was going through – what my OCD meant, and why.

I finally started to understand it as an illness, and that I could get better. That it wasn’t just me, and what I felt was treatable.

But ultimately, through a form of treatment called ERP – Exposure and Response Prevention – I had to face my fears and it was terrifying.

But I was determined to get better, to live the life that a teenager should.

I had to regularly expose myself to an OCD worry. I’d have to regulate my anxiety, and wait for the panic to die down and not respond with a compulsion. It was so hard to do even the simplest things at first, like to be told to try and move off the sofa and sit on the floor, or touch my mum’s hand or keep the door open of the room I was in.

In the end, ERP  builds up your self-confidence and ability to face the world. I saw each worry as a brick, of varying shapes and sizes, which I’d whittle away at every time I overcame a worry. In the end, my wall of fear came tumbling down.

I started asking my mum to take pictures of me facing my fears, and posted them on Instagram in an effort to share my journey with OCD – to change people’s mindsets on how debilitating it can be, and what it looks like. But that it’s treatable, too.

In January 2020, after 65 sessions of specialist treatment in three years, and missing three years of school, I was discharged from the Maudsley – with no evidence of OCD.

I am still taking medication but have not needed any therapy since. I got to live my life again, going back to school to sit my GCSEs and A-Levels – with amazing results.

Now, I’m 19 and studying sociology at Birmingham University – despite missing so much school. In the future I’m hoping to go into film production and editing.

I’m in control of my life again, and you’d never know from meeting me what I’d been through.

I’m loving life now, and proof that you can – and will – get better.

*As told to Emmie Harrison-West

A brand new Pears Maudsley Centre for Children and Young People is set to open; clinicians and academics from the King’s Maudsley Partnership will aim to speed up the diagnosis and treatment of disorders like Avella’s.

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Sometimes I’d be up washing myself until 5am.