To ask what your perception of OCD is?

[littlemisssunny]

Following on from the other thread about OCD I just wondered if you would mind telling me what your perception of OCD is?

I have suffered with it for over 20 years now, and think it is more common than people realise, I know a fair few people with it, who I think only admitted it after they found out I suffer with it.

It is a very taboo subject and I think the more people talk about it the better understanding there is.

I feel for me there is no cure, but I learn how to deal with things so it's more bearable. It gets worse when I am anxious though.

I am happy to answer any questions, and if others would like to input their personal experiences then please do.

I do think it is somewhat trivialized by people saying they are a bit OCD trust me if you have it you know about it, but I know they aren't doing it to offend anyone, just that they don't fully understand it.

For DS it was contamination fears, plus having to turn off every socket he came across.

Contamination was the biggy as it extended to things someone else might have brushed against before touching some other surface, which left things like the car or the front door 'out of bounds'. Now that was a bugger.

The 'contamination' could be poisonous plants, birds, germs, cleaning chemicals , insects, petrol fumes, shoe polish...

He was 10. It's probably not exaggerating to say that CBT gave him his life back.

My DH has various 'quirks' one of them being OCD, but I would say its mild. And the processes don't change. (although the numbers sometimes do - but has been 3 for a long time now)
For instance before and after he uses a remote control he has to wipe it on his trousers three times. Sometimes he has to do it twice. He has to pick the third magazine from the shelf. He has to take three stairs at a time. And so on. None of it is life changing particularly as I'm used to it now. His rituals make him him.

He is strangely clean in some areas, and revolting (imo) in others. He cuts his toenails so short I wince, and I wont let him near the kids to do theirs because he makes his own bleed. He then just dumps the cuttings in the living room. He clears his nose loudly, and most annoyingly during the night for no other reason than he believes his nose should be 'clean' then dumps tissues down the side of the bed (toilet roll actually - he wont use actual tissues) for 'future use'. He flosses in bed (which makes me feel ill) then also dumps that down the side. He hates people using our toilets though because they 'contaminate' them. He would have a bath/shower four times a day if he could. Oh the list goes on.

He has other issues which include being unable to change a 'fact' in his head. So for instance something I said a decade ago is something that is still 'true'. I'm not allowed to change. This is a problem. He dwells on stuff - I suspect he replays scenarios over and over in his head. On very rare occasions, he changes them and thinks they are real. He has a 'castle' in his head that he builds. This is all probably related to his compulsions

My Dad has had it for years and admitted to his family a few years ago but wont seek help.I know it drives my Mum and brother bonkers and they have got to the stage depending on the circumstances where they will just walk off and let him get on with it without commenting ie if they have arrived somewhere and he is doing the walking round the car going back and forwards, at one time they would be "what are you doing, hurry up" and Mum would be muttering about him 'farting around'. Now they will say "see you at x place" and Dad can go about his business in his own time.

It is a problem if he is driving, as he will leave people sitting in the car for 20 minutes or so and doesnt realise how long he has been. I dont think he really has a clue on how it impacts on others at all as he does have a lot of allowances made for him

Oh the "facts" UGH!!! They are so difficult to deal with!

If I said something to him while we were dating, it has to still apply today.

How about exaggeration or metaphors lynniep, can your DH handle those? My DH cannot handle me saying something like "I'll be down in 2 seconds" he literally has to time me.

I always thought that it was compulsive handwashing/tidying/cleaning/number or word crunching.
With the tidying I would expect their house to be spotless but after watching the thing with that comedian off 8 out of 10 cats it seemed much worse.
One woman with OCD, well her house looked pretty messy and it turned out she was so obsessed with wanting it to be clean she made loads of lists and obsessed so much about the how to make the house clean she hardly ever got on with making it clean. I think those who just tidy non-stop must have a different level of OCD.
I never realised as well how debilitating it was. That poor guy in the program killed himslef over his OCD as he felt he couldn't live with it. It must have been so awful to feel like that and his mum was devastated and you could see she blamed herself as well.

It sounds an awful thing to suffer with but I think there is little public support for sufferers and an attitude of 'just pull ourself together' which won't help

I am undiagnosed, but I have had intrusive thoughts since I was 13. Occasionally, the images are very violent and I suppose I feel too ashamed to talk about or write them down.
Also, I am not affected by this every day, but every time I am high up or at a train station, I think about jumping.

I am obsessed with order and feel anxious when things are not in order. Everything has to be the same way around, lined up neatly, etc. Even DS's toy kitchen had all the cans lined up with labels facing the right way around, when he was little.

But I only feel this way about my own house, other peoples' mess doesn't bother me.

I am not sure if it's proper OCD, as I can control it to an extent. For example, if staying in a hotel, seeing hangers in a wardrobe not all hanging the same way, would irritate me, and I would change this, but I wouldn't HAVE to do it as soon as I noticed. I could have a nap or go for dinner first, but then I would change it.

I also have some issues with germs and fear of contamination. I couldn't live without rubber gloves and kitchen roll and I can't touch sponges or cloths or without them, in other peoples' houses. In fact, I usually dry my hands on loo roll in someone else's house rather than use a guest towel, although I don't mind sharing hand towels with DS. DS recently got dog poo on his (luckily, cheap!) trainers, and I made him throw them away rather than clean them. Yuk!

I have 2 friends with OCD, for both of whom it takes the form of needing to have clean houses - they can't rest if the house is untidy, the bathroom is cleaned fully daily with lots of bleach and they get very anxious about germs and dirty stuff. One also has a need for things in her cupboards to be in order - her sister (who thinks it's all oh-so-hilarious) comes around and messes with the order in her cupboards and then laughs as friend has to put them all back in the right place again.

This friend does also suffer from anxiety and depression and takes medication for both; I'm not so sure about the other friend (re medication).

Both have been diagnosed with OCD, by the way - I'm not making assumptions!

I'm think I'm a little bit OCD, but I'm not completely sure. I think there is scale. I've never been treated for OCD. I'm less obsessive than I used to be. Can anyone tell from the following description if I am?:

I would never be able to live with another adult because I need to know where everything is, and if something is moved I get stressed.

I used to be obsessed with counting everything, footsteps, tiles etc. I managed to stop doing that.

Now I check everything. I sometimes have to go back to the house in the morning a few times just to check I switched everything off. Even then I don't believe that I checked them and have to go back again, even then I'm still not completely confident that I've done it.

I get stressed if everything isn't in its correct place. I can't stand to not know where things are. Dd is allowed to make a mess, but for short periods and everything has to be put back correctly afterwards.

It's little things that bother me, like having things lined up exactly and in their correct position. I will spend hours doing jobs that take other people minutes, like putting the shopping away.

I over-organise everything. I have hundreds of spreadsheets for every aspect of my life. I enjoy this though. I'm glad I'm not obsessed with cleanliness as I really don't like cleaning.

Maybe I'm a control freak, maybe I have OCD?

I don't think it is a taboo subject these days.

Sorry to be ignorant but I find this very interesting. It seems to me that for some people on this thread, the OCD stems from creating a ritualised way of dealing with a phobia? Would that be a fair thing to say? I don't think anybody has said it in those terms but that what strikes me.

For a long time I have had emetophobia (can't bring myself to type what that means even) and I know that I have dealt with it in the past by little rituals. It has also lead to instrusive thoughts and has curtailed my life in a lot of ways - travelling and food are the biggest things because they might make me feel ill. I had never considered myself to have OCD before I am beginning to think differently after reading this. Do I have the wrong end of the stick?

Somebody also mentioned the link to autism and I have to say that I do see that in my DS1 who has Aspergers. He for example will only tolerate being without socks for as long as it takes to have a wash and a bath. He won't even take them off to go on the beach and instead complains about sand in his socks. He wears them in bed all year round and even when he is so hot, he can't sleep. I think the typical ASD trait of wanting to do things in a certain way to a certain timetable sound like OCD too and, I should imagine, the instrusive thoughts are part of this. I know my DS won't let things go until they are done the way he expects them to be done. I can't see how instrusive thoughts aren't part of this.

Thanks for the thread littlemisssunny. It has been very thought provoking.

Happybubblebrian you probably do, DD needs an itinery for everything she hates spontaneity. Where we are going, what time at, when we will get there etc.

I think everybody does have strange ideas and thoughts to some degree and it manifests itself when you are stressed. I have the symmetry thing and I imagine throwing myself off high buildings or under trains but I would never class myself as having OCD IYSWIM?

The ASD link is interesting, my DD is on the spectrum.

Yes, my DS can cope with change if he knows it is coming but he can't hand spontaneity or surprises either.

He likes to know what is coming next and will constantly ask what the time is (he won't wear his watch), when will we be going and what are we doing next? It is a bit dispiriting when you have taken him somewhere for a treat or because he wanted to go there and all he seems to worry about is when we are going!

he can't 'handle' not hand spontaneity.

Thanks Cocolepew, I think I probably do too, in a mild form.
It's hard to deal with what seems like chaos sometimes.
Everything has to be in order for me to feel ok.

This is an interesting thread.

I am late to this thread but as far as I understand it, ocd sufferers live in fear that terrible things will happen if they don't do their counting or checking or washing or whatever it is. So the awful thoughts and the anxiety about not being responsible for allowing these things to happen must be torture to live with.

I suffer from OCD and have done for many years now, I have good days and bad days. I used to suffer from obsessive thoughts (absolutely horrific part of the disorder) but thats calmed down a lot. Mostly I have to check doors several times, check windows are shut, check the oven is off. Things like that it has got worse since I lived on my own. Plus if im stressed it goes a lot worse. There definately isnt enough awareness about this disorder and some people think its a joke when they hear of the symptoms but it can be quite debilitating for the sufferer.

This thread is weirdly encouraging: DP has OCD (mainly about recycling, also about catching OCD or CJD) and I sometimes find it very difficult to deal with. It can be very lonely as a partner, I can't talk to DP as he gets stressed, which makes him worse, and people without OCD in the family don't understand. He checks things repeatedly and has quite a few rituals, but the main problem is not throwing anything away, including rubbish, and I'm not allowed to either. When he does do it, it takes ages and he gets really stressed. CBT has helped, because it taught him to think through the consequences of what will happen if he doesn't do his checks or throws something away. He's also got better since DD arrived.

Just wanted to thank everyone for their responses, I know it's not an easy thing to talk about.

I have thought about setting up a support group in my town but wouldn't even know where to start, it would just be nice to talk to others who understand because while other people can be sympathetic I don't think you can truly understand it unless you have it.

I think everyone has the capacity for OCD tendencies, like someone said earlier, there are many shades of it. I have odd quirks and intrusive thoughts but don't consider myself to have full-blown OCD because I find them manageable and they do not interfere with me completing everyday tasks: e.g. I have a thing about the numbers 3, 6 and 9. If I'm offered a crisp I take 3, but if I accidentally take 4, I have to take 2 more to make it 6 crisps (I can't put back once I've taken.) If I took 7 crisps I would have to add to make it 9 - very annoying for the crisp offerer, so if it's someone I don't know so well, I refuse the crisp! If I scuff one shoe, I have to scuff the other to make it even.

When I was little I'd have to switch the lights on and off 3 times, which I grew out of, but I still have unpleasant thoughts such as when I'm at a train station I think "I wonder what would happen if I just pushed this person over the edge, or jumped myself." I'm obviously not going to do it, but I have to 'talk' myself out of thinking that way and I distract myself by thinking one word over and over. I am also a bit of a hoarder and by no means the stereotypical 'OCD neat freak' people imagine. My sister on the other hand has to have everything parallel and in its place, and also shows signs of hypochondria (every headache is a tumour, every leg twinge is DVT etc) There's a history of mental illness in my family, ranging from bi-polar and depression to schizophrenia, so I'm very aware that the few manifestations I have could easily become more severe at any time.

I definitely think you should start a support group OP, it is a very difficult thing to discuss. Perhaps test the waters by setting something up online first, because some people may feel more comfortable with the anonymity, but would still like to know there's others like them in their area. (Also there may be some that physically can't leave the home due to their illness, but ultimately, meeting up and sharing experiences would be a great form of therapy.) If you can get local health care professionals on board, they could attend for support.

There are so many tragic stories (such as in the Channel 4 programme), so I think it's very important to challenge the taboos we have surrounding mental health. Best wishes

I don't know if I'll be any help on this but here goes.

My mother has it. She had it very badly when I was a child. I was aware of it but not what caused it or what it was called. She was just my mum.

My perception is that it is a defence mechanism of some sort. She certainly had a lot of stuff to cope with as a child herself and I think it developed out of that. She started having psychotherapy when I was about 9, maybe? and that has sorted her out in a lot of ways, recalling the past which she had blocked out, and trying her best to deal with it in more constructive ways.

She is far better now at 60, it is still there but it is not noticeable most of the time, only when she is really stressed.

I think I have some elements of it too - intrusive thoughts, habits, counting, spelling words in my head all the time, 'safe' and 'unsafe' words and so on but it is mainly silent, that is it goes on inside my head, constantly, but no one else knows about it as I don't do stuff like washing my hands or checking things over and over.

Saying that I do have an incredibly untidy house and that's very much linked to it...it's just not the standard perception of OCD, and it's mixed in with depression and anxiety and a chronic (not severe) eating disorder as well.

If you had asked me what my brain looked like as a child - I mean a train of thought - it would have been like a computer script, every word I thought had to be spelled inside my head again and again.

I don't know where I found the energy. It's not that bad now but it is still there if I think about it, just I'm very used to it now so it goes unnoticed.

I have OCD - although I didn't totally believe my diagnosis for a long time, because mine isn't the tidying type. I have severe health anxiety, and develop my rituals around that - for example, when I'm convinced I have an issue, I check myself for symptoms, constantly seek reassurance from others, and google endlessly - the thoughts of the illness occupy my every walking moment. I also have a problem with driving - to the point where I no longer drive because I can't cope with the intrusive thoughts that I might accidentally kill someone and not notice (when I was driving, I had to retrace my steps, look at the aa website for accidents on my route that I might have caused, check the car all over every time I stopped for evidence of an accident, and constantly check the rear view mirror to see if there was a casualty - which was a vicious circle because then I'd worry I missed something when I was checking the mirror). When it's bad, it's like theres an ongoing battle in my head - the rational side vs the OCD side, and the OCD side always wins. Then I do the compulsion (googling, checking for bruises, asking oh to check) and it feels better for a short time, but never long until I think "what if I missed something" and it all starts again. When I was a teacher, the OCD centred on me accidentally harming a pupil.

And I bet very few people I know in real life have any idea about any of it (just the few who I have told)

My son is 11 and he was diagnosed at age 9. He fears he's doing bad things or hurting people and apologises all the time (he's a gentle should who has never hurt anything). If he had behaved really badly (his perception) he'd run his hands under hot hot water or trap his fingers in a drawer. I have to watch him like a hawk.

He's also anxious about germs/bins/touching others and disappears in a dug of anxiety if he has to be in contact.

It's very very hard to watch.

Gentle soul. SOUL!

Eliza that is very sad for him and for you to watch.

When I was a child, about 9, I had a lot of that sort of issue, I was very overscrupulous about various things and always apologising.

I remember asking my mum if she thought I was going mad, because I genuinely was afraid that I was.

She said that if I was really mad then I wouldn't think I was - I'd think everyone else was.

But I did have some serious problems nonetheless, I wish there had been more intervention available in those days.

Error oh bloody hell, I wonder what would happen if I pushed people on to train tracks... I have honestly spent my whole life thinking everyone gets these thoughts but no one talks about them.