A sufferer's story (in her words and entirely unedited by us)

I’m 5 years old, just moved from Sheffield to Darley Dale in Derbyshire with my Mum and 11 year old sister. We live in Sheffield as my Mum moved there to be with my Dad she was from Derbyshire.  My Mum and Dad had split up when my Mum was pregnant with me and she wanted to move home to be near her Mum her Dad had died when I was 3. I started Primary full time the next school year. I had a really close bond with my Mum, my sister would say I was spoilt. Not long after we moved Mum and Dad gave their marriage another go.[1] From what I remember and what my Mum says my OCD started around this time. She recalls my primary school teacher saying to her “are you aware that Amy washes her hands a lot”. Of course she had already noticed for herself but when my OCD symptoms began, my Mum thought they were just childhood fears and silliness and that I would grow out of it. As you can already imagine, this did not happen.

During the next few years as OCD wormed its cancerous way into my mind, me thinking that it was normal and me, it’s just who I was. I didn’t know any different I was a child. I had no awareness of mental health issues let alone the complexities of OCD. Mum knew nothing of OCD and that that’s what it was. Gradually OCD took over my life, I found it difficult to interact with other children as I was to busy with my rituals, ruminations and washing. Plus children are cruel and I was a prime target, being what children would call “weird”. So schoolwork was hard and so was keeping friends. I think I took on a role of being naughty to impress kids so they would like me and this just got me in trouble. I had detention more times than I could remember. By the last couple of years of primary school felt completely picked on by the headmaster and my class teacher at the time. Due to my history of playing up and strange behaviour I guess even he saw me as an easy target. My Mum needless to say did not like him and was relieved when I went to secondary school. She saw this as a new start for me and a chance to make friends. She thought that I would grow out of my eccentricities, as she called them, and that secondary school would help me do this.

Strangley a specific moment of my early torture of OCD stands out in my mind. I must have been around 9-10 and me and my Mum had just been food shopping. I used to really enjoy food shopping with my Mum we would always have something scrummy for tea that night and me and Mum share a passion for crusty fresh bread : ).  We got some of that nice chicken with stuffing in the middle and made sandwiches with crusty bread. The snippet of memory as if in a film clip is been sat at the bottom of the stairs in our house, it was only a tiny area between the dining room to the back of the house and the living room to the front and had doors either side. I had with my sandwich on a plate in my hands and was praying to God over and over and over again, while crying with frustration and desperation I was pleading to God not to make my obsessions and fears come true. I couldn’t stop until it was done right. It’s strange what sticks out in your mind I perhaps had many moments like this but that sticks out. I can feel the desperation and hopelessness I felt then as I’m writing this.

My biggest fear as a child was losing my Mum. She was my world I loved her so much and the thought of losing her panicked me to the point I often went into Mum’s bedroom in the middle of the night in a complete hysterical state and sat on the floor next to her bed. Eventually we set up a television and video player in my room so that when I couldn’t sleep I put on a film to take my mind away from my fears. I remember the film that I played over and over again each night was called “My father the Hero”.

After starting secondary school at around the age of 12, my OCD had not improved. I may have had brief relief with the novelty and newness of starting a new school and meeting new people but as soon as I was settled so was my OCD. My Mum realised at this point that we needed help and took me to the family doctors.

I found it difficult then, as I still do now, to talk about my OCD and my specific obsessions but I explained as best I could what I was thinking and doing. My Mum, with me listening at the door, explained what he saw with regard to my behaviour and what I had told her when I broke down and asked for help. The GP diagnosed OCD. I saw this GP a few times to report and monitor symptoms and their severity. It was comforting to be accepted differently and understood by my family, things started to get better. Perhaps it was just getting it all off my chest.

BIG MISTAKE A. Stupidly, I stopped seeing the GP.

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After a couple of years struggling for some time, I eventually admitted to Mum that I was struggling again. OCD really is the secret disorder, it’s so hard to describe I don’t intentionally hide it, it’s like it’s just programmed into people with OCD to hide their symptoms and compulsions.  I still subconsciously do it now and I don’t know why. It’s like when you have medicine in your mouth and you just can’t swallow it. You know what you want to say the words on at the tip of your brain but you just physically can’t say them.  Anyway, Mum took me back to the same GP and she referred me to a child psychiatrist.  We’ll call him Dr B.

Dr B was wonderful he was kind and sympathetic; he really made me feel like I could open up to him. It was so refreshing to learn about OCD and that it wasn’t normal and wasn’t me as a person. It was an illness that could be treated, in time.  I didn’t have to live like this for the rest of my life. Sometimes knowledge really is power. There is such relief and momentary peace from getting things off your chest and being able to be open and be honest about what’s happening in your head and life and to somebody who understands and doesn’t judge you. Somebody who isn’t shocked when you say what you’re really thinking, he has heard it before, perhaps not the exact same but not far off.

The sessions with Dr B were more about counselling, emotional support and learning about the condition rather than CBT or a specific therapy. I saw him every few weeks at first, I had the choice of two locations or he would come to the house if I didn’t feel comfortable in a surgery.  I was also put on the medication, fluoxetine, which I took for a few years and. My Mum came to some of my sessions with me, she didn’t have to but I wanted her there for many reasons; she was my rock, I didn’t know the guy I was talking to and if I got tongue tied she could speak for me.

The combination of the medication and counselling (but I thought mainly the medication) that cured me and gave me my life back.

By the time I was to take my GCSE’s my OCD had improved a great deal and I managed to sit them and get 6 grade C’s. Dr B did also send something to the school or exam board to give me some leeway. I decided to go to college after I left school. I was well and wanted to do something with my life and get a decent job. I finally saw a future and had ambition.

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I was 16 and had just been given my life back, fresh start, new surroundings (college) and no mind torturing cancer in my head. I went from struggling to do school work with grades low, having no hope, being a stressed, depressed, angry person, being bullied and having no friends at school to having lots of friends, a social life and no-one bothering me at college, top grades, happy, friendly and a bubbly fun person. My Dr B called me his success story. I sent him a thank you card when I was discharged from his care.

Life WAS great! College was going great I finished the first year with top marks and decided to stay on for another 2 years to do something a little more challenging, I realised I was quite intelligent without my OCD. I also had a weekend job.

During the next two years I saw Dr B now and again to report symptoms and development but was still doing fine. You also need to keep going to appointments to stay on the books when you have been referred in case you suffer a relapse. Otherwise you may need to go through the whole referral procedure again and that can take months. Plus I felt that Dr B had a sincere interest in my well-being and how I was getting on.

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Adult hood! At 18 Dr B reluctantly referred me to the community mental health unit (for adults) within the NHS. He said that this should have been done when I was 16 but as I was doing so well and we had a good patient – therapist relationship he had kept me on his books as long as he could.

This next bit is a little hazy. Hey, I had a hectic social life and wasn’t interested in OCD anymore. My first appointment at the adult unit was for an assessment. As if I needed this, dredging through all my history and obsessions etc. just because I had turned 18. Anyway I was asked if I had any preference with regard to whether I wanted a female or male psychiatrist. I requested an older male. At the time I thought it was because I thought women were more judgemental and I didn’t want a younger male as I would feel a little uneasy, you know sexual politics!!!!! Looking back now though, it is quite clear that it was because Dr B was a mature gentleman. [2]

I can’t clearly remember why or whether I was asked the preference question before or after but for my first few months of being at this unit I saw a young male psychologist. To my surprise, at the time, he was really nice and easy to talk to. I can’t really remember working on anything with him specifically just telling him my obsessions, he might have explained to me CBT and how it works. Yet again at this time I was still doing well and wasn’t at crisis point. So I wasn’t desperately interested. This man was only at that unit to finish his training I think and he was leaving so I was passed onto another member of the team who was an older male as requested.

For some reason I did not take to this psychologist at all, I felt a little bit like he looked down his nose at me. He did not make me feel easy he did not fill in the awkward silences nor appear sympathetic. Maybe my new found confidence had given me a bolshie attitude.  I was well, appointment times interfered with my busy life and I missed a few appointments and eventually stopped going altogether. After not attending your appointments for a lengthy time you are discharged.  2nd BIG MISTAKE, kind of!

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I am now 25years old and recovering from a severe 2 year relapse of my OCD. All in all it is longer than 2 years as it started with little things and grew to take over my life. OCD will start in the smallest ways, you just start noticing obsessions but not doing or thinking anything about them and once they know they are in they settle and fester and before you know it you are becoming habituated to the OCD gradually not enough for you to notice that it’s a problem. Before you know it you are confined to your house with non-stop thoughts of torment, carrying out non-stop compulsions, with no friends and no hope, wondering what went wrong!

I had swept OCD under the carpet and tried to forget it was there, put it in my past. I didn’t think it would come back and take over my life again. I also thought that when I was an adult and older that I wouldn’t be as susceptible to it. At 16 I was free for the first time! I was naive and uninformed and these actions were the worst thing I could have done!

I think things started to go downhill when I moved out of my Mum and Dad’s house. Mum always said my OCD got worse after times of change in my life and circumstances.

As the OCD crept back in it started with little things, manageable, bearable things that didn’t stop me living my life, going out working etc. By the time I had to think about dealing with it, it had taken over my life! AGAIN!

I became housebound; I had to go off work on long term sick and eventually resigned. I stopped driving,  I couldn’t cook or clean, I didn’t bother getting dressed most days and just stayed in my pyjamas, half the time my hair was greasy and I didn’t bother with any make-up. My boyfriend did everything for me, I’ll refer to as K. He was understanding and researched the illness, trawled the internet to find me help and came to my appointments with me. I drank way more than I should, some nights I would literally go to the kitchen and down a shot of vodka or two to help me turn of and sleep.

Here is a relevant famous quote that I love:

"The chains of habit are generally too small to be felt until they are too strong to be broken" Samuel Johnson

This couldn’t be truer! I had tried to pretend OCD wasn’t part of my life anymore and it came back with a vengeance.

The first thing I did when I realised I needed professional help was go my GP, Dr M. I explained my relapse and asked for help. Dr M put me back on Fluoxetine (the drug I was on years earlier). I was hopeful with this drug as it had worked so well before so stuck with it and powered on working my way up to the full dose and giving it enough time to take effect.

Around 3 months passed, I was up to 80mg of medication and still no better. At this point I was still trying to go to work but I was struggling with the tasks and with driving and getting ready in the morning. I started to repeat things e.g. getting dressed, going in and out of doors and driving onto streets or going past town or border signs. If I got an invasive “bad” thought when I was doing any of these things I would get the urge to repeat and couldn’t stop repeating until I did it right (without a bad thought). Needless to say this started a vicious circle as when you know you are approaching a town sign for example, you’re afraid you will get a bad thought so in turn you get a bad thought. Indeed the best thing to do would be to ignore it and then it will go away. By repeating what triggered the thought you are surely opening yourself to experiencing the thought again. You logically know this but it makes no difference, you do it anyway. That OCD urge inside you is so strong, you cannot settle until you have carried out your compulsion. It’s like a buzz of relief when you have done it. Stupidly you even sometimes tell yourself “I’ll just do it once more”. As my current therapist said, that is like an alcoholic saying “I’ll just have one drink”. As an OCD sufferer you are indeed and anti-anxiety addict. I also had serious problems with making purchases for the same reasons as repeating things but you can’t repeat a purchase so you are stuck and I’d end up throwing things away or not using them.

As you will be aware if you have used medication for OCD the first few weeks are a living nightmare and so are the weeks following every medication increase. There are also side effects that you may suffer on high doses of any drug. Fluoxetine made me really tired all the time I had to cut down my hours at work and I had difficulty concentrating but there were also ten thousand thoughts and obsessions running through my head and all the compulsions I was carrying out.

Dr M mentioned referring me to the mental health team but didn’t seem overly eager or enthusiastic about doing so. I don’t know why, I guess he thought the Fluoxetine would work eventually and eliminate any need to refer me. I was slowly getting two my wits ends. My life was slowly slipping away from me as was hope of a recovery. One appointment I had with Dr M really didn’t help this as he had literally said to me “if the medication I was on didn’t work then there was nothing else"!!!!! I was afraid of this but I didn’t actually think it was true and to hear it out loud from a GP, the person who I believed to be my only hope. It was dark outside with streetlights eliminating my path. The walk to my car was surreal, I felt numb, I felt like my life was over, I mean if this is what life is, then it really isn’t worth living. People joke about “oooo if there wasn’t chocolate or soaps life wouldn’t be worth living” to actually feel that way was like being in a nightmare. You had to wake up and be relieved everything’s OK any minute. That minute didn’t come. I got in my car and broke down in floods of tears. I had that feeling that no matter how many tears you cry or how loud you scream you just can’t release the feelings and emotions that are bulging inside. I felt like my world was over and any life, or hopes of any, were a distant memory that I had to say goodbye to now. I sat in the car and rang my K and told him about what had been said by the GP. I can’t remember exactly what he said to me that night but he thinks that he reassured me that there were plenty of other things that we could try and that this wasn’t it.

The OCD just took on more and more forms and obsessions, more OCD habits developed. I was forced to request the referral as he clearly wasn’t going to do it and he had nothing further to offer me. He had said so himself!

Weeks passed maybe months and finally I got an appointment in the post from the mental health team. It turned out that the appointment wasn’t even with a therapist it was just for an assessment and to trawl up all my past again! After seeing this woman (who was really nice to be fair, I wish she had have been a therapist) she was to pass me onto the consultant psychiatrist. We will call him Dr W. It turned out Dr W was the only psychiatrist you could be seen by at this unit anyway. So why did they make me see a middle woman???? It’s like the NHS strive to pass you through as many people as possible before you get to the place that you need to be? It might be worth the wait if the at the end of the process you actually got the help you needed.

Time passed, me still feeling that life was not worth living and never would be, struggling to even get out of the house at all.  Finally I got an appointment with Dr W, who I then had to describe my OCD to for the third time. He decided that as the Fluoxetine maximum dose was not working that he would put me on Clomipramine but before I start taking this I had to wean off the Fluoxetine and I was on the maximum dose this took longer! More weeks of living nightmare, first coming off one drug and then starting another. I saw Dr W on a regular basis as he gradually increased my dose to the maximum, I can’t recall precisely what this was now. Really I was just waiting for the day that I would feel some relief. I honestly at this point thought that the right drug would work as it had done years earlier.  He had mentioned CBT but warned me the waiting list was long and that as my condition was so severe at that point that it wouldn’t be suitable for me.

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A family member had recommended hypnotherapy from personal experience. I had read about it helping OCD but I was scared! I was scared of not to be in control of myself and my mind, after all with OCD you are trying to control your thoughts and actions, if this is what you are striving obsessively for why on earth would you willingly go and pay somebody to take that control . K really wanted me to try it, he was starting to think that I wasn’t trying hard enough to get better so, for him, I reluctantly found a hypnotherapist on the internet, checked out his credentials and made an appointment. He sounded nice on the phone and genuine. When I went to the first appointment I was a little surprised that it wasn’t a surgery, it was at his house. It made me feel a little uneasy, this along with my anxieties, you can imagine what turmoil my insides were in. His was really nice he introduced himself told me about himself and his history, where he studied, he had his certificates on the wall. I explained my problems. He said that we needed to get acquainted before he tried any hypnotherapy as I needed to trust him, so we would need more sessions. I thought it would just be one session in and out, I didn’t realise it was more complicated.

The appointments were £30 an hour and we set them up weekly sometimes I was there two hours. He performed some relaxation techniques on me involving relaxing music his voice and my lying down comfortable. He gave me some tips on how to combat my obsessions e.g. repeating while driving and thresholds; he would get me to imagine in detail, getting in my car driving home including the route I take, driving on my street, getting out of the car, putting my key in the door and turning it and walking through the door and closing it behind me, the do it all in reverse. He got me to repeat this task a few times before I left to go home. I also used this technique when walking up the stairs in the house as I repeat this many times also. My appointment’s did make me feel a sense of relief and helped but he couldn’t hypnotise me, through no fault of his, my mind wouldn’t let go. I surmised that I can’t be hypnotised. The therapist told me that it was down to me to let go and relax and that if I couldn’t do that then we could just do some talking therapy up until I could. I didn’t continue with this, I couldn’t really afford it and I went there for hypnotherapy and if I couldn’t do this I may as well try something else like the CBT through the NHS, at least that was free and in all the research I had done it seemed to be the answer.

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Things got no better the relief I felt from the hypnotherapist was short and in no time I was back to desperation. I dreaded getting up every day as all daily activity was just so hard. I was struggling to get to sleep at night as my mind wouldn’t stop. I’d lay awake thinking about throwing myself down the stairs. If I did this then I would be hurt maybe unconscious and I would get taken into hospital where I would be looked after and people would be around all the time and caring for me. I wouldn’t have to go to work struggling with every task, washing my hands over and over, looking strange walking in and out of the building many times. If people knew I did this due to OCD they would realise how ill I was and help me.  Needless to say my OCD put pay to this theory by making me afraid of banging my head and killing myself.

#I battled on, eventually coming off work on long term sick leave as everyday tasks had just become too difficult. On my way to work I would end up driving round and round in circles, I had started to close my eyes when crossing borders, passing town signs or going onto new streets and decided that it was too dangerous for me to drive anymore. I was trapped; I live with K and its miles away from my Mum and sister. My Mum can’t drive so she only came once a week as she had to catch three busses. Basically my house was my prison.  K was my boyfriend along with being my family, friends, taxi, cook, cleaner, personal shopper and carer. He was doing everything for me he took me to my appointments and at one point he even washed my hair and hands. I was an invalid trapped in an OCD filled mind, paralysed just about managing to breath, in the right direction!

My appointment’s with Dr W were brief and consisted of my saying I was suicidal and confined to the house and sometimes him updating my sick note and him sending me away for 6wks at a time telling me either to take a higher dose or give the medication more time to work.  After being on the max dose of Clomipramine for 6 weeks or more me and my family were pushing to try another drug, Venlafaxine was our suggestion as we hadn’t tried this and it had aided my sister in her recovery from depression. Dr W agreed that it was likely as it had worked for a blood relative that this drug may work for me too. So we started the long process of weaning me off Clomipramine and onto Venlafaxine. At this point and for months I was receiving no help in the form of talking therapy or counselling, nor given any information on any local OCD groups or charities.  I just kept getting sent away with another pill to go and look at 4 walls day in day out, without being able to move without fear, or rituals and repetition! I was eating cereal for dinner if anything as I couldn’t cook, whatever I did would involve so much repetition I was starting to damage things in the house e.g. washing things I would get water everywhere ruining the bathroom floor and sides, I would get angry at myself and hit walls and the stair post, I would slam doors and stamp on the floor upstairs. I was also wasting money as if I cooked something and it didn’t feel right or I had a bad thought during making it then I would need to throw it away. If I washed something or myself and had a bad thought I would need to wash again using up ridiculous amounts of shampoo, shower gel and washing up liquid.

When I was caught up in repetitions it was like I was a robot that had short circuited. I would get so frustrated that I would scream or shout out-loud or cry so hard to just try and release the mass of emotions and feelings inside me. It didn’t work I just couldn’t release the tension. I felt like I was going to pop there was no respite no relief no for a mille-second! I was stood in the kitchen in a state of despair and I saw the knife block. So I picked one up and put it arm, I dragged it down my arm, it hurt but didn’t pierce the skin as the knife was blunt, so I tried another knife, blunt, another, blunt. Wow we did have crap knives!  I tried holding the knife down on my arm harder to try again, this hurt and made marks but again didn’t create much damage just a slight scratch. This time I gave up all the looking for a knife had given my mind a rest and I had calmed me down. It wasn’t long before I was in the same place and state. I tried the knives again but harder this time. I couldn’t bring myself to actually do it hard enough. I don’t know why it just didn’t seem right my body naturally and instinctively didn’t want to hurt itself and resisted. It’s like when you fall over your arms automatically come out to break your fall. Your body is trained to survive and protect itself and it was doing this. The trouble was I still had that mass inside me that needed to come out and it seemed to me the only way to do this was in blood and/or pain. I can’t fully explain why I felt this, it was just momentary relief.  I guess it was that when you are in pain your mind is overcome by something else other than OCD. It seemed like if I was hurt it would be something “real” to deal with and worry about.

The frustration and emotions kept welling up with no release so some time later I took to the razor, this was sharp, you always nicked yourself when shaving and it hurt and it bled, a lot! So in no time my fore-arms were covered in cuts. I wore and long sleeved top so K wouldn’t see them, deep down I wanted him to see them I wanted somebody to realise how desperate I was. I was crying out for help for somebody to save me.

I wanted to end it all and thought about it many times and even how I would do it but I was too scared to do anything about it.  One time, after a challenging repetitive bath, I held my head under the water, it felt peaceful,  I thought if I just stayed under here, within minutes, it could all be over! The thoughts, the misery, the strain, the suffering and pain would all stop. What could I wish for more????  It brings tears to my eyes typing this now as it’s terribly upsetting to think that something could do that to somebody, bring them down and destroy them that much that dying is a better option?

Clearly I didn’t go through with it, as I said I‘m too scared of what happens when you die! I also knew it would kill my Mum and be completely selfish to the person that found me. Also everyway I thought of doing it I talked myself out of morally e.g. if I crashed my car, what if I killed a car full of children, or if I took an overdose and ambulance came out to me, what if that ambulance could have been saving a child and due to my stupidity that child died! Most of all I think, truthfully, deep down, I did believe or have a glimmer of hope that I could get better and that to kill myself would waste myself and my life, and I would miss out on all the things that I could have done, that I want to do. Having children, getting married, getting a dog, working with animals, places I want to go…….

Another 3 months plus until I was on the full dose of Venlafaxine and had given it a fair trial at the maximum dose. OCD no better, the only thing I can say for the Venlafaxine is it made me more emotionally fit to deal with the repeating and thoughts without getting as angry, frustrated and upset as I did before e.g. I could do my repeating without stamping on the stairs or hitting walls. I didn’t get the urge to punch things or break down in tears or scream or injure myself. I also didn’t think about suicide. To be fair the drugs are anti-depressants, there is no Anti-OCD drug! As far as help with beating the OCD was concerned I gave up on Dr W and the NHS and with the help of my family raised funds for private care. THE BEST THING I COULD HAVE EVER DONE!

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The start of the rest of my life happened for me on the 15^th May 2010, I will remember this date for the rest of my life. It was the day that I started and intensive rehabilitation programme with India Haylor at the OCD Centre London. K had found this centre on the internet while looking for things to help me recover. He had e-mailed India to ask question and that started the ball rolling. I entered into e-mail communication with her and ended up chatting on the phone to discuss my options. Her main priority was to get me to the clinic and help me. We booked me in and a few days later I had an over the phone assessment of my condition with her to enable her to offer me the right treatment and for her to get to know me and my OCD. She likes to do this on the phone before you go to London as the time you have with her in London is precious and you need every minute to work on your OCD and recovery.

The programme I chose took the format of a 5 day intensive and you worked in a group with around 7 other OCD sufferers. You stay in London and work all day everyday on your OCD. During the day you work with India and your group and in the evening you go off and do your homework. Homework could be reading, tasks to broaden your frustration tolerance or exposure tasks.  Some homework for me included reading a chapter of “10 Steps to Positive Living” author Windy Dryden, going into a Church (I had fears of God and scrupulosity), another was not to wash your hands for 24 hours.

As a sufferer have great difficulty in talking about what my exact obsessions and invasive thoughts are. When talking to NHS professionals, in the past, I had always cleverly explained my OCD but skirted around actually getting right to the nitty gritty as doing so made me too uncomfortable, brought on my OCD and made me want to wash.

I went to London with the intention of doing things and talking about things that would send my OCD into overdrive and that would make me want to wash myself and the things that I had done and said off me, things that would make me not want to wear the clothes or shoes that I had worn during this time again as they would be tainted and not to use any product that I had used during this time e.g. make up. I thought right go and do whatever needed and if you need to you can wash when you get home after the 5 days. I had to play it this way, people I cared about had raised a lot of money to send me there, it was made clear that success rates were based on the clients participation and co-operation,  I owed it to K and my life couldn’t go on this way.

I borrowed clothes of my sister in case I couldn’t wear them again, took cosmetics that I didn’t mind throwing away and shoes I didn’t really wear anymore. When I was there every concept of my being was put to the test. There was no way of skirting round things with India she is so intelligent, experienced with OCD and intuitive she would know if you were holding back or lying, not that I did lie. She also made you feel that you could open up and want to open up and use the programme to its fullest and the skills you learnt made it easier to do so. India is a sufferer as are all the team at the OCD Centre (one of the reasons I chose this clinic) so she knows all the OCD habits and avoidances, she has done them. At some points during the week I loved her and at others hated her guts and wanted to punch her.  She did say at the beginning of the programme “On some days you will love me and some days you will hate me” but she was there to get us on the road to recovery and she needed to get tough sometimes to do this. Especially with me, I was clever at getting round my OCD and things that brought it on but none of this washed with her and she gave me and my OCD a well needed kick up the backside. She made me want to be honest with the people around me regarding my OCD and my avoidances. You need to be completely honest about your obsessions to conquer them and get the right help for them.

I can’t go into great detail about the programme or the people in it as it is confidential but it is based on the following areas; knowledge, cognitive, behavioural, relapse prevention, be your own therapist and acceptance & commitment. It included the use of CBT, REBT, Mindfulness, and Acceptance & Commitment Therapy.

A few of the things that happened at the clinic were:

1. Group counselling and not just from the therapist but from each other and yourself.

2. Learning to look at life and OCD and the impact it has on you and your life differently e.g positive, constructive thinking.

3. Methods of measuring OCD and putting your obsessions into perspective e.g. if your worst fear is contracting AIDS if you were to contract AIDS on a scale of 1-100% how terrible would it be? Let’s say somebody completely consumed by this fear says 100%. Then you are asked - if your daughter was to die where would this rate? How terrible would this be on the scale? Well definitely 100%. Would getting Aids really be as bad as your daughter dying? What if your daughter were to die in a car crash while you were driving and it was your fault? You now start to see the bigger picture. In comparison getting AIDS my only rate 70%.

4. Talking about your obsessions and fears. This is good to get things off your chest and help your therapist and support group understand you and how they can help. Sometimes just to hear your fears put in words out loud will make you laugh laugh/cry at yourself. Laugh at how insane what your saying is and cry that you actually believe it and let it control you and you living your life. In your head they are so real but out loud you hear them as if you were somebody else and see them for what they are. Sometimes! Don’t get me wrong this might not work at all for some people with rational fears- obsessions.

5. Exposure tasks, daunting but completely the best therapy you can have IF you can do it. It is hard! I had a fear of thinking that I want the things I’m most afraid of to happen while in a church and that God would think that I was asking for these things to happen when they were the things I feared happening the most. I had to go into a church and say that I want my fears to happen, out loud!

6. Frustration tolerance and confidence tasks – becoming comfortable being uncomfortable, riding discomfort out and not carrying out a compulsion to alleviate it. Boosting your confidence to tackle your obsessions and fear and shame attacking so you aren’t ashamed of who you are and your OCD. An example of shame attacking that the group I was part of had to do was all lay down on a pavement in London while people were looking at us and taking photos of us!

7. Problem solving in a constructive positive fashion

Some of these ideas may sound completely daunting to somebody with OCD and it would have to me but at the point I booked onto this clinic I was willing to try anything, my only other option was a life of torment and misery or suicide. Wasn’t it worth a go????

At the end of the programme I had made great friends, developed a superb relationship with a great therapist, K knew more on how to treat my OCD and not to collude or reassure it, plus he knew his boundaries and to look out for relapses. I also had the toolkit to face my OCD and be my own therapist. My recovery was by no means over; I needed to continue what I’d started in London when I got home. I needed to continue learning and reading, putting my new ways of thinking into practice to habituate them and continue doing exposure tasks on a regular basis to keep me mentally fit.

Following the intensive programme the group took part in weekly, then fortnightly conference calls to report in developments, successes or any relapses and we all set each other homework by means of researching, learning or exposure tasks. It was also good to get advice and get things off your chest.  It was nice to keep updated on the others in the group and how they were doing. It’s also great to have friends who know precisely what you’re going through, who know how hard a simple task can be for people with OCD. There’s no pretending, no judgement or embarrassment.

The group calls are now over but three of us from the group have decided to continue our own group conferences with India. We all have different sub-forms of OCD but still understand each other and work well together as we know what will push each other’s buttons enabling us to keep each other on track. Some obsessions are so embarrassing you don’t feel that you can talk about them but in a group of sufferers the embarrassment goes away as everybody is in the same boat. I needed this. OCD can be a lonely place, your family can be the most amazing supportive, caring people but they don’t know what it’s like, not really. Don’t get me wrong carers are going through a really rough time also and a sufferer can’t really understand what they are going through, so carers need this kind of support too. I tried to get K to get some support but he was too stubborn.

Re-read the chapter marked with a # then read the following - We are now nearly 5 months on I am not 100% better or rid of my OCD but I can safely say I won’t be thinking about jumping off any buildings anytime soon. I have begun volunteering at the Jerry Green dog sanctuary near where I live; I have researched getting on a course to become a veterinary nurse and what funding I can get. I have found the University best for and attended an Open Day; I will be putting in my application before January. I need an A-level to get into the University so I have got a job on a 12 month contract to enable me to work up until I can go to University and study at home for an ICS A-level. I have also been clothes shopping, got a new phone and laptop. I have been seeing and talking to my Mum more often, cooking, cleaning and planning meals. I even baked cakes and biscuits for the Jerry Green Open Day, to raise money for the rescue centre.

At the clinic in London we set 6wk and 6 month goals. I set 20 6 wk goals and of those I failed 1 due to my own fault, 3 due to money and 1 I don’t know why it might be a miss understanding. I am well on my way to completing my 6 month goals. It is good to set goals to measure progress and show yourself what you can do so you have a sense of accomplishment. It’s good for a positive attitude and outlook.

I have to say it is 10 times harder as an adult to a) suffer OCD b) seek help c) get it d) take steps to recovery and e) stay there. You have so many more responsibilities as an adult and OCD just made me totally dependent upon my boyfriend. If I didn’t have him it would have been my Mum looking after me. I commend him for his strength, patience and understanding throughout this whole period. His is truly a remarkable human being.

The one thing that is easier as an adult, is that there are no childish bullies and people are great deal more understanding and sympathetic to your condition, as are you. As a child you have no idea of what is going on physically in your brain and I believe on of the main elements of a successful recovery is to understand what is happening to you and your mind.

If I advise others anything, it is, don’t be as naive as I was. OCD will always be a part of your life you just need to learn to deal with it and manage it. As my therapist said it’s like going to the gym, if you stop going you will get unfit and gain weight. If you stop working on and with your OCD then it will play up and worm its way in and before you know it your back in that awful place.

I am hoping that my story will offer sufferers information & advice, things to try and to avoid and hope. Don’t make the same mistakes I did, let my suffering due to OCD and the errors of handling it be worth at least teaching some of you what not to do and hopefully sparing you the same pain and lost years of your life.  I realise for some of you this is too late and you are already or have been where I was. Something I say to myself all the time is “when I’m on my death bed, I don’t want to have any regrets, I want to be able to say I lived my life to the fullest, did the things I wanted to and made the most of the short time we have on this earth”. Take control now and get on with living your life and for goodness sake enjoy it.

Begin everyday as if it were on purpose and live each day as if it were your last.