This summer, I decided to walk from John O’Groats (Scotland) to Lands End (Cornwall) to raise awareness of OCD, help change people’s perceptions of the illness, and to offer help and support to those already suffering.
Obsessive Compulsive Disorder (OCD) has defined and shaped my life for some 11 years. My twenties were actually defined by fear, perpetual anxiety, stress, self-doubt, self-hatred and depression. OCD is terrifying. It’s made me feel as though I don’t know who I am as a person. At my lowest ebb, OCD made me question whether my life was even worth living. It wasn’t until my world started to fall apart around me that I realised I couldn’t do this alone anymore. I needed help. I found it at the 2gether Trust service, Let’s Talk.
Eleven years may sound like a very long time, but it’s actually less than the average time it takes someone with OCD to find help. Ask someone ‘What is OCD?’ and they’ll probably picture someone who wants things to be clean, tidy, organised – they may mention excessive hand-washing. In today’s society, OCD has taken on a whole new meaning. People will say, ‘I’m a little bit OCD’ or ‘I’m very OCD about it’.
So now, ‘being OCD’ can be used to describe keeping a very tidy house, or even collecting every item in a video game! It’s true meaning has been lost. It is no longer seen as a severe mental illness; now it’s just an enjoyable personality ‘quirk’.
OCD is caused by unwanted, disturbing, upsetting thoughts, known as intrusive thoughts. But if society at large is telling us that OCD is, for example, excessive hand washing – how is someone really suffering with OCD supposed to know any different? OCD sufferers will wrongly think the fault lies with them, and that is when thoughts of suicide may begin to arise.
We need to change this!
I wondered if I’d be better off dead
December 2014 was the worst period of my life. I have never attempted suicide, but at that point in my life, I was so utterly petrified by the intrusive thoughts permanently inside my head – and what they might mean for me as a person – that I wondered if I might be better off dead. I’d been studying at university when the worst happened…
I’d experienced deeply unsettling thoughts before – what I now know are called ‘intrusive thoughts’ – but never to this degree. Fear and anxiety began to consume me. I was so afraid. It was all I could think about, and my thoughts spiralled out of control. A few weeks later and things were so bad that I left my accommodation and my housemates. I even had to end a relationship and leave my studies. I think I may have cried more during that period than in all the rest of my life. It affected my appetite and I was afraid of sleeping in case the thoughts made their way into my dreams; at times they did.
I went to see my GP finally told him – without going into any detail – that I was experiencing these horribly unsettling thoughts, and that I couldn’t cope anymore. I had always been too scared to talk to anyone else about my mental health – it was bad enough for me to deal with it alone – I certainly didn’t want to start having conversations about it!
It had all started when I was twenty. A few years earlier, I had read something online about sexually transmitted diseases and how some were incurable. This had planted a fear in me that manifested itself years later on a night out. What if the person I’d been in contact with had an incurable STD that could have transferred to me? I began to panic, and because of my lack of knowledge, rational thought went out the window. When I got home, I stood at the kitchen sink and washed my hands over and over again until they were red and sore. I kept on washing until I felt I was clean enough to stop.
I took all the items of clothing that I’d worn that night and threw them away. But even then, the thoughts and the fear wouldn’t go away. Instead they continued on a downwards spiral of worry and doubt; of what-ifs and worst case scenarios. Over time I became afraid of my own body. I became a hypochondriac, always looking out for signs of a potential illness. In the years that followed it was usual for me to spend up to 30-minutes washing my hands every time I used the bathroom. A bath could take far longer. I’d want to cleanse my hands to make sure I wouldn’t transfer potential germs to other surfaces or even to the people I cared about.
I feared going to the doctors but I built up the courage to visit them a couple of times over the years. No doctor ever talked to me about OCD or intrusive thoughts – instead I had been given a number I could ring and some cream for my hands and sent on my way. But when I went to the doctors in the New Year in 2015, I promised myself I was going to take whatever help I was given… in this case, a talking therapy service – for which I registered.
The phone call that turned my life around
On 19th February 2015, I got a life changing phone call from an NHS 2gether Let’s Talk therapist. The therapist asked me questions about what I was experiencing. I was very nervous about what I would have to talk about, and reluctant to go into any detail. However, she was able to reassure me through her experience – she told me I wasn’t alone in this, and that it was a diagnosable condition that many other people experienced. When she told me it was OCD I was very taken aback. I was under the misconception that it could explain my hand washing and fear of germs, but I had never connected it to the upsetting thoughts. Suddenly everything made sense.
What followed was a course of Cognitive Behavioural Therapy (CBT) which completely opened my eyes to OCD. CBT showed me that it had actually started even earlier in my life than I had realised. It also showed me why it had potentially arisen. Most importantly, it has taught me coping methods and strategies for trying to deal with it.
Naturally, you have to work hard at coping and dealing with OCD. Alas, there’s no quick fix. I still live with OCD every day of my life, but at least now, I am able to understand what I am dealing with.
It is for this reason that, earlier this year, I decided to take on the #OCDwalk to raise awareness and fundraise for OCD. I embarked on a 1200-mile journey, taking in climbs of the Three Peaks of Ben Nevis, Scafell Pike and Snowdon along the way, carrying over 20kg on my back, for a walk that would ultimately take me 96 days. Along the way I raised money for the charities: OCD Action, OCD UK and Mind – all fantastic organisations that provide a great deal of help, support and information. Please do visit their websites to learn more about OCD as a mental illness. And check out the free PDF guide resources at The Shaw Mind Foundation on OCD. These are Obsessive-Compulsive Disorder (OCD) & Body Dysmorphic Disorder (BDD) and an OCD summary guide.
The first week of the walk from John O’Groats to Inverness along the busy A-road, was undoubtedly the most painful week of my entire life! But as the walk went on, I grew in strength and experience. I visited various OCD support groups along the way, and was energised by messages from people through my website, telling me that my story was helping them. I even had some fellow OCD-sufferers come and climb Ben Nevis with me!
I met so many fantastic people on my journey, saw some amazing sights and got through two pairs of walking boots. It was the most incredible experience, and honestly, I miss it. But my eyes are now set on future challenges. Perhaps I might even find a career in charity fundraising…
So far the walk has raised just over £2,400 and you can still donate here.
To find out more about the #OCDwalk, see photographs from the journey, and read more about my experience of OCD, you can visit my website.
We can change things…
People’s understanding of OCD isn’t going to change overnight. Unfortunately, misconceptions are deeply ingrained in the public consciousness. But I know that, through word of mouth, we can make a difference. Help and support is available for those suffering from OCD. It’s time for change.