Billy's Story

Many thanks to Billy and his mother Sarah for sharing their accounts of Billy’s living with Emetaphobia and how it affected his life, education, and mental health as a teenager. Told as part of the Mind The Gap project, Billy hopes his story can help improve the current gaps in CAMHS.

Revolving gate on a snowy path

Billy’s story

Age: 15

It started a couple of years ago when I was 13 years old. When I went back to school I felt I wasn’t really prepared for it, I was in year 9 and I didn’t keep up with the pressure and preparation for GCSE.

I felt like I would throw up the whole day and felt really sick and told the school nurse. My mental health slowly deteriorated, one day I just couldn’t go to school.

We went to doctors I was misdiagnosed with tonsillitis, I was put on penicillin for a few days and I felt really ill. It was awful. I went to another doctor and they said it’s anxiety and if you go back to school let them know. I got a nurse and support worker and they told me I can sit down in a quiet place out of lessons and I thought ok I can try that. I spent a lot of time in a quiet room feeling sick all the time… I was in tears all the time.

I got panic attacks on top of that… I was on edge.

At that point we didn’t know I had developed Emetaphobia with anxiety. I had to go A&E and it was horrible there… It eventually got worse and worse and I lost a lot of weight in a short amount of time because I couldn’t eat and because I didn’t eat I felt more sick. I was 33kg. I was admitted to hospital with the early stages of starvation. I stayed there for a week just trying to put on weight. At hospital they thought I had eating disorder which really annoyed me because I knew I didn’t have an eating disorder…

Finally I was referred to CAMHS (Child and Adolescent Mental Health Service) emergency list but it was a 7 months waiting list which we didn’t know at the time. During this time I was really struggling and refused medications because they made me sick.

At CAMHS I got CBT (Cognitive Behavioural Therapy) for six sessions and it helped me. I slowly felt a bit better but then they said there was no more they could do. So I was discharged from CBT.

I kind of managed to go back to school but any minor thing could be a step back for me. Eventually I was kind of settled in the paragon (a room for kids with special needs). They set individual targets for me and my dad used to come and sit with me.

The next term they started to put pressure on me, telling me you can go to the lessons, do this and that, and do more targets. Some people there had no clue what was going on and just put pressure on me. One night I had a panic attack after a long time. I went to school the next day and it was very stressful. I felt sick and had more panic attacks as soon as I entered the paragon. It got worse and worse to the point I couldn’t go back to school.

We rang CAMHS but they said they can’t help me anymore and told me ‘just keep trying what you have already done’. It was disappointing. I was still seeing my medical doctor though.

One day I had to go to a dentist. They were very helpful and told me about a therapist in Nottingham who used hypnotherapy. I went to see him and it went really well but my parents had to self-finance this treatment.

Because of lockdown it stopped but I was able to have sessions over WhatsApp which worked but not as well as in person. Once lockdown eased I went back in person. I have finished treatment but have an open door if I need to go back for a ‘top up’ session.

What didn’t work for me was school environment and pressure they put on me. They wanted me to go to certain lessons. I think I wasn’t taken seriously enough. CBT worked but CBT is temporary and isn’t a long term fix. You can do a bit of CBT but the information your brain processes about being sick doesn’t change or go away with CBT.

What could help was other resources that could help with my Emetophobia. CAMHS didn’t have resources that I needed and that was the problem. If they had other resources that they could introduce to me it could really help.

After CAMHS, coping wise I didn’t, I just kept on going with everything but it’s really hard. That’s what I am doing now, keep going!

Sarah’s account (Billy’s mum)

The condition, Emetaphobia, manifested itself in a restaurant when, after our meal Billy went to the toilet and began to have his first panic attack. It took Bill’s dad and I 40 minutes to get him out and to the car. It was Sunday and the next day was the first day back after Oct half term.

Bill struggled with swallowing his tablets and this led to extra stress as we were pressuring him to take them because they were antibiotics. I went to another doctor and they said it’s anxiety and if you go back to school let them know. We were told by this GP that they would refer Bill to CAMHS.

Bill would repeatedly phone my husband and I at work begging to go home.

We decided to take Bill to A&E to speed up the CAMHS referral but the doctor said there was nothing he could do except write to our GP. He discharged Bill and wrote the letter; we later found out that the original referral by our GP had never been made.

We decided to take Bill back to A&E because he had stopped drinking too. He was admitted to hospital with the early stages of starvation.

Meal times was a constant battle of reassuring Bill that he wouldn’t be sick if he ate; he would overthink about everything. He also could not leave the house with having a panic attack. We had to encourage him to walk to the end of the drive which he would only do at night when no one would see him. This slowly progressed to the end of the street and then out with the dogs during the day.

At CAMHS he had CBT treatment which only worked when he was in a rational frame of mind. Although we were recommended to try hypnotherapy and have found this extremely successful in treating him. We had to self-finance this and believe if it was available earlier he would have recovered.

The school, although they didn’t say it, were trying to keep the local authority happy so that we didn’t go to court for unauthorised absence; they are still trying to do this now. They have very prescriptive paperwork to complete.

Bill is a long way off being a confident young man in a public setting but when we look back on how bad things became we are extremely proud of him.

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