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"Nobody could say 'this will help' with any certainty"

Alongside young people like James, we’re swearing to take on mental illness through life-changing research. Find out more about We Swear and join the movement.
 

James spent years unable to get the support he needed to cope with OCD and eating disorders. He’s swearing to take on mental illness so future generations don’t face the pain and confusion he did.  

I developed obsessive-compulsive disorder when I was 14. I became fixated on my appearance and on rituals involving washing. It took me longer and longer to get ready for school, and eventually got to the stage where I physically couldn’t go. I would walk around the city all day and come back home at the end of the day.

When the issue came out there was very little understanding from the school. I was treated as if I was badly behaved.

I started to go for mental health treatment but felt that the approach was very superficial – they were interested in changing my behaviour rather than in what I was experiencing underneath. I see it as the first of a string of missed opportunities. 

I feel really angry and hurt about what I’ve lost in life. I wasn’t able to go to university when I was younger. I’ve lost my social group, my friends and a lot of opportunities in life. I’m frustrated about where I am in terms of my career, because I feel like I’m still trying to play catch up.

And the injustice is that I happen to have been born in a time when our lives have to be put on hold because we just don’t know what to do about mental illness. It’s been much worse in the past, but it could be so much better in the future.

During treatment, I gradually switched from being focused on my appearance to focusing specifically on my weight. I lost a lot of weight very quickly, and later started eating large amounts and then being sick – binging and purging, rather than just purging.

I remember trying to explain this to my doctors and being told: ‘That’s just the anorexia speaking – you’re probably just eating normally’.

But at one point I was spending £40-£50 a day on food. Over the years I’ve spent thousands. 

And I went to hospital a lot of times with a lack of potassium. The doctors saved my life and I’m grateful for that. But the lack of awareness and understanding I was shown was shocking – the doctors just didn’t understand what I was going through.  

Looking back, I think it was clear I was trying to communicate what I was going through – but I was mostly treated for physical problems.

I had suicide attempts but even then was mostly told: ‘You must eat’. But when I did gain weight I felt worse because the method I had to control the emotions I was facing was taken away.

At one point I was being passed around from general psychiatrists to eating disorder specialists and I was given so many diagnoses it was ridiculous. Mood disorders, eating disorders, bipolar disorder, borderline personality disorder, Asperger’s syndrome – every doctor thought they had the answer. It really wasn’t helpful.

It took seven years for me to get specialist psychological therapy. At that point I had 12 months of dialectical behaviour therapy (DBT). 

I was using binging and anorexia to regulate my very intense emotions, and DBT focuses on intense emotions. I found it very helpful in terms of understanding my behaviour. I felt listened to and finally felt like my therapist got what I was experiencing.

It wasn’t perfect, but it was absolutely what I needed and it’s stayed with me. I haven’t been anorexic since having DBT and I don’t want to be. I still had severe bulimia afterwards, which I’ve had up until quite recently, and it was frustrating that at the point there was nothing more they could offer me. There is so much more we need to learn and be able to do.

Up until that point I hadn’t really felt angry at all. I’d felt that what I’d experienced was all my fault, and that if help wasn’t being offered it was because this obviously wasn’t a serious problem and was all in my head. I took it as a personal failure rather than a lack of research or knowledge.

But then I had quite a big realisation that I had deserved better. It had taken years to find a treatment that was helpful, and even then it hadn’t been completely effective.

 That’s when I started campaigning for improvements in the way we respond to mental illness. I wanted to channel my anger into something positive.

Everybody says it has to be you that decides to change when you have a mental health problem; you’re the expert. I really do believe that people with mental health problems should be listened to and are experts, but I’m not a qualified doctor. When I was ill there were points when I needed somebody to say, ‘this is what you need to do and this will help’. 

Yet nobody could say ‘this will help’ with any certainty. Often people were quite honest with that. One doctor said to me: ‘You’ll never get better’.

It can be so depressing looking at the statistics about how many young people have eating problems and are self-harming, but actually I think it can also be a story of hope – because this is where we can make a real difference.

Yes there’s frustration for me that I didn’t have the support I needed, but the opportunity is that other people can have it in the future. We can change how we respond to mental illness, but that’s only going to happen if things change dramatically in terms of research and in terms of our knowledge of mental illness.

Last updated: 26 July 2017

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