OCD - a beginner's guide?

I started to write a post, based on my experiences, to attempt an answer to the question:

What things can people do that would help or demonstrate love to people with OCD?

But before I got very far, I thought that it might be helpful, if I first provided some (more) basic information about OCD. I'm a bit wary about doing this though. I'm not viewing myself as an expert or anything, I'm just sharing information that I have acquired over the years. Also I'm thinking that you may know more about OCD than I do - well if that is the case, please feel free to contribute via Comments. That would be excellent - thank you.

So here's some basic information about OCD, illustrated from my own experiences.

OCD takes many different forms, and everyone's experiences are different. However, there is also some similarity between people's experiences of OCD.

OCD consists of two parts.

Obsessions

These are thoughts that take over an individual’s brain. Some people with OCD have loads of really distressing thoughts. They can be almost continual. For example, they may be thoughts relating to accidentally harming others, or doing something obscene. I am fortunate, as my thoughts are a lot more settled now than when I was younger.

I used to worry terribly over things. Here is a couple of examples.

The Milk Bottle I can remember we used to have milk at school in glass bottles. I re-call that I put a damaged empty bottle in the crate. Later in the day I was beside myself with worry over the bottle being damaged and whether anyone would notice, and would it end up being re-used and people might get hurt. The worry affected me physically. My fear was extreme. It is only recently that I have realised that this was all part of the OCD. When this level of anxiety took over, there was just one thing that brought me relief, and that was talking to my mother about whatever my worry was. She would re-assure me that it was all ok. I was really fortunate, I knew that I could talk to my mother about more or less anything, and that was an amazing help.

The Unforgiveable Sin I am a Christian, and back in my mid teens I had massive worries over whether I had committed the ‘unforgiveable sin’. I won’t go into details, but it was something to do with the devil. I did not raise this with my mother. I just re-call weeks of overwhelming anxiety.

Some people with OCD have solely obsessions, no compulsions. This is referred to as ‘pure O’ OCD.

Compulsions

These are the actions (rituals) that individuals feel driven to carry out. Some people count, some do certain things a set number of times, others wash their hands until they are virtually raw. For me, the compulsions mainly consist of checking things. This was and is still driven by anxiety that what I do might not be good enough, and that I might inadvertently make a mistake. Making a mistake has a huge amount of baggage attached to it. The anxiety also covers the possible consequences of a potential mistake. For example, if the gas on the oven was left on, there could be an explosion.

As a teenager, I handled this by avoiding situations that triggered this checking, and the anxiety which drove it. Here are a couple of examples of this.

‘The Last Man Standing’ I would avoid being the last person downstairs before bed, as if I was last, I would check that the cooker gas was off, the lights were off, the taps were off, and the list goes on and on. The checking was not quick it would take me some time. My mother would wonder what I was doing, still downstairs, and call down to me. If I moved quickly so as I was not the last person downstairs, then I ran the risk of comments being made about that. Either way, I felt that what I did was wrong/bad. Then once upstairs, I was faced with a similar scenario as I would do what I could to ensure that I was not the last person to use the bathroom. There was the feeling around that I was selfish, pushing in.

‘Home alone’ I would never stay in the house alone. So I normally went on holiday with my parents right up until I was about 30! In my late twenties, there was one occasion, when I did stay at home alone, when my parents went on holiday. The anxiety and checking were so bad that it took me more than two hours between being ready to leave the house, and actually leaving it. That two hours was filled with repetitive checking. I just could not cope and took holiday from work, so I could stay at home until my parents returned.

I checked things exhaustively, and still do when the OCD is severe. It was very, very difficult, and stressful to get to the point where I felt sure enough to move on to the next thing that I needed to check. I believed that doing the checking was something abnormal and bad. So I did not talk about it, I went to great lengths to hide it, even my parents did not know. It was not until I was about thirty that I sort help and started to understand that what I did was not bad or wicked.


Thankfully, nowadays, there is a lot of information available about OCD. Much is right at your fingertips on the internet. There is one site that I came across recently, which contains testimonies by people who have OCD about their experiences of OCD. These give you a feel for the wide variety of ways OCD affects people.

Dealing with Intense Feelings

Contains swearing, so please do not read if you will be offended. Thank you.

Sometimes the emotions that I feel are just so intense, and expressing my feelings on the web helps me to re-gain some kind of equilibrium. I have learnt that I get very upset and distressed over any problems and/or disappoints regarding getting help/support. This is one such example.

A few weeks ago, triggered by learning that I had a further seven weeks to wait for the assessment, I wrote the 'poem' below. I felt desparate - desparate for treatment. I posted this poem (semi) anonymously on the website of an organisation that provides me with support. And I also included it as a comment, to a post on Talking Therapies, on the Mind website.

The weekend followed, and at some stage during it, when I was calmer, I undid both of these actions. Making it public had served its purpose - I was in control of my emotions, and decided that it was better all round if it was removed.

So why am I posting this poem here on my own blog? Well I actually think that if it is going to be shared anywhere then this is the place.

Why am I sharing it at all? It communicates something of my feelings. It provides a glimpse of my world, when I'm not at my best! It reveals the extreme affect on me of the delays in treatment caused by the long NHS waiting lists. And sadly, many, many other people with mental health problems are in the same position.

At times, life is shit,
I am shit.
Sitting here,
Sitting here,
Still sitting here,

Why don’t I move?
I can’t be bothered.
I don’t like myself.
I want to hurt myself,
So that I suffer.

Still sitting here.
In seven weeks, I’ll be assessed.
When will someone help me?
I’m sitting here.
Still sitting here.

In seven weeks and one day,
I’ll have been assessed,
I’ll be sitting here.
When will someone help me.
I am shit.

I am sitting here.

Now I have died

Have you noticed that people will turn out for a funeral, making a huge effort to attend?

This 'turning out' of people can be a source of great comfort and support to the nearest and dearest of the deceased. But what about the deceased?

NOW I AM GONE

It is strange, you think of me, now I am gone.

It is stranger still, the miles you travel, to mark my passing.

It is strange, when we spoke so little, when I was here.

It is stranger still, when it was so long since you had seen me.



I wrote this poem about a year ago. If you would like to use it, please state that it came from this blog by 'Forever Learning'. Thank you

Tomorrow

I'm feeling quite low.

I just so want help - treatment. I have a regular appointment with the psychiatrist tomorrow. Last saw him two months ago. This will be the last appointment with him; it will be someone else next time; he is moving on. I feel like saying to him: 'It's all right for some. I wish I could move on. All I need is some therapy, and then I might, just might, be able to move on with my life.'

But I won't say this - I don't think it would really be that helpful!

‘God wants you to be free of OCD’

A couple of weeks ago, whilst I was starting to relax after having dinner round at friends, I was caught totally by surprise. I found out that my friends wanted me to seek and receive healing and freedom from the OCD from God. My re-action to this was one of fear. I felt extremely threatened.

So, what did they believe God would do, if I did the ‘right’ thing? And why did I re-act the way that I did?

Let's go back to that evening. In answer to a question, I explained that the proposed treatment options being pursued for me, are not cures for OCD, but my hope is that they will enable me to gain further insight and skill at managing the OCD. And that I would then be able to manage it without the need for regular courses of therapy, and hence I would be able to keep myself healthier.

What I did not realise was that this was definitely NOT the right answer. I was told firmly (and to me it seemed very stern as well) that

“God did not bring me back to Himself for me to have a continual battle with OCD. This is not what God wants for me. I need to find out the root cause of the OCD, and to get that dealt with. There are people who can help me identify the root cause and to deal with it. It would be hard, but that these friends would support me through this.”

I’ll translate the above for those readers who are not familiar with fundamental Christian beliefs. “God wants me to go to a Christian counsellor, who by using prayer ministry, in conjunction with counselling techniques, would work with me, to identify the root cause of the OCD. The end result of the counselling would be that God would free me completely of OCD.”

What my friends already knew, but you do not know, is that just over 20 years ago, the leader of a church that I was part of, prayed for me that I would be free of OCD – totally and completely ‘healed’. The flip side of this coin was that as far as the leaders and other members of the church were concerned, the healing took place – I was free of OCD. If I didn't feel free of OCD, it was my fault e.g. I did not have enough faith. Mistakenly, I acted on the belief that I was free of OCD, and a mess ensued – I won’t go over the gory details of this, but it had a profoundly destructive affect on me, emotionally, mentally and spiritually.

I can honestly say that a couple of weeks ago, after the above dialogue, when my friend went to hold me to start praying, I was really, really frightened. I felt extremely threatened. My eyes filled with tears, and my friend noticed and let go of me, and the situation passed.

Without this episode, I already have days when I believe that I am wicked, because I am convinced that I could stop the OCD rituals if I wanted to stop. This is one of the distressing thoughts caused by the OCD. I have to focus on what I have been told: I am not wicked, and that this belief is one of many distressing thoughts that are caused by OCD.

There is no question that my friend had the best of intentions. However, I was left feeling:

• I was not living up to their expectations.
• I did not have sufficient faith.
• I was not good enough.
• I was a failure.
• They would no longer support me, and help me, because I did not meet their expectations. Something that I learned last time round, 20 years ago.
• I was wicked, because God wanted to heal me, and I did not want to be healed.

I felt that I was evil because the thought of not having OCD frightened me so much. I thought surely I should want this healing. I was a ‘sick’, horrible person who wanted to remain ill. I have talked this over with a couple of people. Both of them said the same thing to me, and that has brought me some degree of peace. They understood my re-action. They understood that a life without OCD is currently outside of my comprehension, and that terrifies me. They talked about prayer working hand in hand with the treatment that I am hoping to receive.

I also know that I feel safe being treated by professionals within the NHS. I feel threatened by the thought of 'independent' people treating me. Staff within the NHS have ensured I am safe when I am ill, and in return I trust them. Maybe being well is not actually the scary thing, maybe it is more to do with who works with me to achieve improvement and/or freedom from the OCD. I need to trust those people.

My faith is weak – I know that. Regardless of what we believe, let’s aim to show compassion to others. Let’s aim not to heap even more expectations on other people. Let’s aim to support people unconditionally. Let’s remember that the person we are speaking to is in a different place (spiritually, mentally, emotionally and physically) than we are. Let's remember that just because the other person is in a different place from us, they are not in a lesser place or a worse place, just a different place.

On the road to recovery

During the last couple of weeks I have started having thoughts about things I want to do once the OCD is under control. It is the first time I have experienced thoughts like this for about two and half years. This is another step on the road to recovery from depression.

Like so many ways in which depression has affected me, it is not until something returns to my life, that I realise it has been missing!

I am looking forward to a time when I walk in the countryside. Where I can enjoy the natural world - fields, trees, birds, a breeze, maybe corn fields, maybe woods. I am also looking forward to a holiday in the countryside or on the coast - somewhere quiet, and peaceful - here in England, and maybe not too far away from home.

These things are not currently within my grasp due to the OCD, but this is still a really excellent change for the better! :-)


Photo 'Light in the Forest' from Photolibrary by Dan

Is the light on?

Imagine standing in the bathroom. It has no windows, the door is shut and the lights are off, so it is very dark. I think that you would most probably be sure that the lights are off - I'm not certain, but that is what I reckon.

Maybe you are thinking - of course I'd be sure, that's obvious. Maybe you feel a bit annoyed, because it is just so ridiculous to even think about whether you are sure. And that illustrates the difference - a very big difference.

In that situation, I would be very unsure whether the lights were off. There would be serious doubt in my mind. It could take me fifteen minutes or longer to be sufficiently sure, so that I leave the room. I would still not be certain, but sure enough to move on.

My eye sight is fine. I'm highly intelligent - honestly folks.

OCD takes many forms. This illustrates one way that it affects me, and has affected me for as long as I can remember. I am unsure whether lights are off, doors are locked, the oven is off, taps are off, plugs are out of plug holes, sockets are off, electric plugs are out etc etc etc etc. The list goes on and on. The main times that this is a problem is if I want to leave home or go to bed. At these times I need to be sure of all these things. At its worse, it has taken me about two hours - two hours of checking.

I'm highly intelligent - I know that I've said that before, but I just want to make sure that you remember that - ok. I am not stupid. My thought process is generally very logical. This led to me being very successful working in IT. I know that, when I am checking, what I think and do is not logical. When working, I would be able to make large changes to computer systems that process customers' bank accounts. And yet, it was very difficult for me to be sure that my desk drawers were locked, before I left the office for home. Changing the computer systems was easy in comparison - well ok - that's a slight exaggeration! Being sure that the desk drawers were locked could be a nightmare.

Let's return to the lights. I know that the bathroom is dark, very dark. But that is not enough for me to be sure that the lights are off. That is the fact.

I've been told that it is frequently highly intelligent people who have OCD. My experience is that it varies over the years, both in terms of severity, and also in terms of the specific problems that it causes. I am fortunate, in that I have had times when the OCD has been very well behaved, and not caused me many problems.

I hope that this has been of interest to you.

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Please do not leave comments with suggestions on things that might help. I don't want to appear ungrateful. I have had OCD for decades, and have tried many things to control it. At the moment, I can't cope with suggestions of ways to tackle it, sorry.

Broken communication

I wrote this poem about a year ago. I wonder if you identify with the sentiments expressed in it.

If you would like to use it, please state that it came from this blog by 'Forever Learning'. Thank you

Let’s Communicate

Why do you ask how I am?

Why do you ask if I am feeling better?

Already you have decided the answer.

For you, I must be better.

That is all you want to hear.

Why do I say I’m fine?

Why do I say everything is ok?

Well, I want to please you, to fulfil your expectations.

If I say I’m not ok, you will require an explanation.

An explanation I can not give.

So it is easier to say what you want to hear.

Let us be careful; careful how we ask.

Let’s ask, truly wanting to know.

Let’s ask without expectations.

Maybe then we will communicate.

Not just talk, but actually communicate.

Maybe we will meet each other, where we are.

_____________________

Bit about living with OCD

Sorry for the gap since my last post. I hope you won't give up on me!

I have some good news. I have a date for the long awaited appointment at a special centre, where I will be assessed for treatment - it is mid May. When I heard this, I was very distressed for some hours. I think it was a re-action to having to wait seven more weeks. On the one hand, if I consider this logically, I know that it actually is not a long time. On the other hand, the reality of day to day life means that this seems a very long time. Our perception of time is strange, isn't it? Does the speed with which time passes, always seem to be the opposite of what we desire?

A couple of weeks after the assessment, I will find out whether I am being offered treatment at this centre. If the answer is 'yes', I think, it is likely to mean waiting about ten months for a place. I am continuing to believe that it won't be that long, because I am not able to cope with the alternative. If the conclusion is that the treatment that they provide is not appropriate for me, then I think that they will suggest alternatives. I am blanking out this possibility, in my mind, as well.

One day this week I went out to a big store to buy an essential item, that I could not order online for home delivery. I have someone who supports me, when I need to leave home, and she came with me on this trip. It was too daunting for me to go alone. The OCD was a nightmare - I don't feel able to go into details, even here where I am anonymous - suffice it to say that the OCD makes walking on pavements, tarmac etc very difficult and extremely stressful. On top of that, my anxiety levels make it difficult for me to express myself clearly when I need to talk to staff in the store. Later on, there were the school lads who found the 'walking difficulties' I was having highly amusing. I returned home exhausted, but the positive thing is that I did it.

To think that I held down a responsible job in IT for a good number of years. My abilities were highly rated. Now I'm struggling with walking on pavements, and whether a light bulb is on or off! How life has changed!