Welcome to You Don’t Look Sick – a weekly series about people living with invisible illnesses and hidden disabilities.
Each week, we discuss a different illness with someone who lives with it, talking about symptoms, treatments and their experiences of how people react to them because they don’t look ill.
Andrew Stevens, from Scotland, has obsessive compulsive disorder (OCD) – a mental health condition in which a person has obsessive thoughts and compulsive behaviours.
He spent 10 years living with the condition, after he started to display symptoms when he left the army, but says he had no idea that there was a name for what he was experiencing.
Andrew had a career in the armed forces as a painter and finisher but was made redundant in 2007.
After coming out of the RAF, he got a job driving a bus but he found it difficult to adjust to civilian life.
Shortly after starting the job, he got a cold but went into work. After seeing how unwell he was, he was sent home.
But when he returned to work after a few days later, he was told about the procedures around taking days off, something he wasn’t used to in the army.
He explains: ‘I became obsessive about making sure I was healthy all the time after that. I was obsessed with everything being clean.
‘I became anxious and depressed and quite quickly things spiralled out of control. I began to worry about everything, my finances, my family, about my new job, my home.’
Andrew started to have compulsions to wash his hands, which gradually became worse.
He explains: ‘Everyday was very long as pretty much every action had a routine to it. The worst was washing my hands or leaving the house.
‘I wouldn’t eat food if I thought anything was wrong with it. I was only eating food from one branch of Tesco.
‘I was checking the wrappers and binning it if there was any problems with the packaging. The reasons were bizarre but very real and justified to me at the time.
‘People think you’re weird but it doesn’t make a difference as your anxiety wouldn’t allow to try anything different.’
His compulsions were having a real impact of every aspect of his life – including being a dad to his three children.
He says: ‘When I got home I wouldn’t go near my children. I know it sounds crazy but I couldn’t risk touching them.
‘I was washing my hands four or five times and was still not happy.
‘I would make the bed and if it didn’t look exactly how I wanted it, I would start it all over again.
‘I began to avoid certain parts of the house and then eventually stopped going out too. I would spend hours of time in the shower, trying to get clean.
‘I wouldn’t touch my food and I would pace around the house checking I had locked everything.’
These symptoms continued for 10 years before Andrew finally got help, after his wife suggested going to the GP.
He explains: ‘My wife Claire booked me an appointment and insisted I must go. The doctor quickly decided I had severe OCD.’
Andrew was signed off work and referred for counselling on the NHS, but he was told the waiting list was at least three to six months long.
He called the RAF Benevolent Fund, a charity set up to help ex-service personnel. They enrolled him in a listening and counselling service within weeks, allowing him to return to work within three months.
This helped Andrew to start to learn how to deal with his compulsions
He explains: ‘I wasn’t the sort of person to share my problems in a group. This meant talking on the phone to specialist doing CBT therapy was my best option.
‘The reason I talk about it now is to let others know you can get through this. I don’t want others to suffer as long as I did.
‘What really sticks with me is the speed in which the Fund stepped in and offered support. I wouldn’t be here without them. I was close to ending things.
‘I started realising I could get better and there was a future.’
After starting to deal with his mental health, Andrew was more open with friends and family about what he had been experiencing, after years of hiding his symptoms, and most said they had no idea that anything was wrong.
What are the symptoms of OCD?
Obsessive compulsive disorder (OCD) affects people differently, but usually causes a particular pattern of thoughts and behaviours.
This pattern has 4 main steps:
- Obsession – where an unwanted, intrusive and often distressing thought, image or urge repeatedly enters your mind.
- Anxiety – the obsession provokes a feeling of intense anxiety or distress.
- Compulsion – repetitive behaviours or mental acts that you feel driven to perform as a result of the anxiety and distress caused by the obsession.
- Temporary relief – the compulsive behaviour temporarily relieves the anxiety, but the obsession and anxiety soon returns, causing the cycle to begin again.
He adds: ‘Once I was diagnosed everyone said “I never knew. You worked hard and had a laugh in the group”
‘When you feel like I did, you make excuses not to go to family event or out with your friends and that’s very easy when you work a lot of shifts.
‘My life became eat, sleep, work, repeat as I thought a had control then.
‘After months of therapy, I started seeing people again and they would ask where I had been. When I told them, they would say “You wouldn’t have guessed there was anything wrong as you always seemed fine.”’
‘I could hide it pretty well so that no one knew. People wouldn’t understand as I looked fine.
‘Only the people very close to you can see you’re not ok but you don’t want them to worry so you just get on with life.’
Andrew also feels there is a lack of understanding because people have started to misuse the term OCD to mean they are very particular or like to be clean.
He says: ‘“I’m OCD” is something people say all the time just because they like to keep things tidy.
‘I want people to understand how severe OCD can be. It is a type of anxiety and if you truly have to do that routine then you may need a little help.’
Andrew’s mental health has improved and he says he is now able to enjoy life again.
‘I am now a year and a half after it all, my kids have got their father back, I’ve got a lovely wife, I live in a great part of Scotland. We’re doing things that we’ve never done for years.’
He’s recently set up his own business Courage2Explore, combining corporate team building with military style training. He’s also working with young adults in schools.
‘I really try not to let it hold me back or stop me achieving what I want in life. It’s important for me to strive to live as much of a normal life as possible; I am living independently, holding down a full time job and now have my own family.’
How to get involved with You Don’t Look Sick
You Don’t Look Sick is Metro.co.uk’s weekly series that discusses invisible illness and disabilities.
If you have an invisible illness or disability and fancy taking part, please email firstname.lastname@example.org.
You’ll need to be happy to share pictures that show how your condition affects you, and have some time to have some pictures taken.