Dear OCD sufferer
My name is Ruth, I am 47 years old. I was diagnosed with OCD when I was 24. I believe I had it for a long time before that, but there was very little awareness of OCD back then.
This week is OCD awareness week, and I really wanted to write to you to let you know that there is hope, that I have been where you are now, living with severe OCD. I was in the depths of despair, believing life would only ever be a constant stream of terrorising and guilt ridden days. I have lost count of the number of people I believe I had either harmed through my mistakes or through carelessness. When I was at my worst every day I believed I had either seriously harmed or killed people through coming into contact with contamination and not acting responsibly enough. This was despite the hundreds of daily rituals, changing clothes every time I went out and showering several times a day until I could take no more, throwing away clothes and items I felt were too contaminated to ever be clean again, disinfecting shoes, my phone, handbag, my car – the daily rituals were endless, but they were never enough. However hard I tried to avoid contaminates, and however many times I showered and changed into clean clothes, I still believed I had left a risk to others lives, it was exhausting and I can still remember the desperate yearning I had for some rest from the thoughts of being a bad person that was selfishly not doing enough to protect others.
I wasn’t living my life, I was existing, I would wake up and immediately feel horrific fear and a feeling of disgust about myself and the rituals I had been too tired to complete the previous day. My mind would search for all the possible harm I may have caused, the deaths I might be responsible for, the contamination I may have left in a public place that someone may now be in contact with, and how it was now destroying their lives and those around them….. The thoughts were relentless, my mind was filled with the harm and the deaths I was causing, I felt a disgusting careless human being that didn’t deserve to live.
Over time I just avoided more and more normal every day activities, just in case I came into contact with a contaminate and caused harm. I also decided that even my words caused harm, and so it was best I never met anyone or spoke to anyone. Eventually I decided it was unsafe to even go outside unless I really had to. I avoided being around other people so I couldn’t cause them harm, it was just too risky and surely if I avoided the world my feelings of harm and guilt would stop. Obviously they didn’t stop, I had a family who lived in the world and in my fragile mind I believed they were also being contaminated by the outside world. I had to protect them; I had to make sure they performed the same rituals as I did. This is where I really wish I had STOPPED! Involving my children in my rituals is a guilt I still carry today, I find it impossible to forgive myself for times my OCD affected them. I can only tell myself that I was very unwell, I believed at the time I was protecting them as any mother would – but of course I wasn’t, my rituals to protect them were the very things that were causing them harm. I can only say sorry to them now, for the times I believed I was too contaminated to hug them at night, and for ever letting my OCD affect their childhood.
Eventually OCD robbed me of my job, my home and my husband. OCD destroys lives if you let it take control. It does not protect you and others; it rips lives apart and takes away the joy of life.
What I really want to tell you is that there is hope; you can learn that when you have OCD what you FEEL is not always REAL (I am still learning this). I am in recovery now, I am still working on some OCD issues, but I am no longer existing, I am living! I have two dogs now and I go out and walk and get completely contaminated every day! So does my house! I am loving life again, doing things I had avoided for years. I am back with my husband, I go on holidays, I work, I visit family, I go out with friends, I hug my children as tightly as I can– I allow myself to be happy and to live! I have learned that the risks I believed I came across every day were just not worth the agony I went through or that I put my family through. I can tolerate that we all live with doubt and that we can never rule out risk in our lives. But I can now rationally evaluate how small these risks are, and how trying to rule them out just makes life not worth living.
I urge you to believe there is a ‘Cure’. To believe that you deserve the right support and to fight until you get it. If you cannot be helped through your local mental health team, then fight to be sent to a specialist OCD centre, believe that you have as much right as anyone else to have a place there and to receive the best treatment. Read the Nice Guidelines for OCD and the Stepped Care Approach https://www.nice.org.uk/guidance/cg31/chapter/1-Guidance Don’t listen to “You are not engaging in therapy”, “You have had the 6 or 12 sessions of CBT that you are entitled to”, “You are treatment resistant” , “You know what to do, why are you not doing it?”, “You have had considerable amount of CBT sessions now, what do you expect us to do for you?!” I heard all those expressions over many years, and I was at the point of believing that I would have OCD for life – until I went to one of the OCD-UK Conferences and heard professionals talk about good CBT for OCD, finding the right therapist for you, and how OCD was a completely treatable condition. I heard about people who had had OCD all their lives and had also been told they were treatment resistant, but with the correct support managed to overcome their OCD and reclaim their lives and happiness.
I now see a Clinical Psychologist that I can trust, who seems to believe I deserve to be supported until I am recovered, who has given me the time I needed to work through my OCD at my pace. I see him through the NHS local mental health team, he is the 4th psychologist I have seen through this team over the years, I also saw one privately and spent six weeks as an inpatient at the Priory on an intensive OCD program. OCD-UK told me to never give up, despite probably having seen more professionals than any other OCD sufferer! And I am so glad I didn’t, because I do believe I have finally found the Psychologist that can help me completely overcome my OCD. I have good days and I still have bad days, but on those bad days I now have professional support to help me pick myself up and start fighting again. Everyone deserves to be given that support. I cannot claim to be cured – but I am determined to get there, and the psychologist I work with has tried many different approaches and not given up on me. I am currently reading a book my psychologist suggested I buy, and that we follow this approach for future sessions, and I actually believe it is the final piece in the jigsaw to my recovery. I finally had my lightbulb moment reading it last night!
Please don’t give up on yourself – you can get well, you can beat your OCD and be happy again, life can be wonderful and your mind can be peaceful.