Extreme OCD Camp

[Guest Tricia]

Hello Felix, Thank you for your good wishes.

Mostly, the negative remarks were from people I know well, and were made over the phone. However, a couple were on a forum. The strange thing is, the person who became the most angry, and distressed, suffers from paedophilia fears herself (I didn’t realize that until much later.) She eventually told me that she wanted the symptom itself to remain a ‘secret’. I asked her how she would feel, if that were the case, and she had been tormented by her thoughts, ignorant of the fact that they were OCD. She never responded to that.

Friends who have expressed disgust have contamination fears and they refuse to accept certain other symptoms - especially this one - which I find most upsetting.

The only exchange via personal messages on forums, was when I actively sought help and advice from people who said they were suffering this symptom. One man, who was really encouraging me to go ahead, suffered paedophilia OCD, and he gave me so much helpful information. However, he ended up by saying “This kind of project will do so much good, but be aware that it will inevitably do some harm.” In the latter part of his statement, he was agreeing with the ones who were totally opposed, because they fear some ignorant people will link OCD to actual paedophilia and we could all be under attack by that minority. I am truly still in two minds.

I am also reflecting over Ian Puleston-Davies’ words at the last OCD UK conference. He seemed quite distressed about a scene in his play, which was not portrayed as he would have wished. I had forgotten that if, a big if I know, my play were ever screened, the production would be completely out of my hands. Ian Puleston-Davies kindly responded (positively) to a question I put to him about my idea of a screenplay, but I am as indecisive as ever (and indecisiveness is not usually a feature of my OCD!). Those words ‘you’ll do harm’ just won’t go away.

[Ashley]

Those words ‘you’ll do harm’ just won’t go away.

But, in counter response to that Tricia, the amount of people that could be helped or educated about OCD would be far, far greater by your work I suspect. I also suspect any 'harm' would be minimal and actually is only a reflection of those individuals own fears, rather than a likelyhood of harm grounded in reality.

I think we risk doing harm every time we do anything in public, I was told launching OCD-UK would do immense harm. The good we (by that I mean anyone who tries to do something positive for people with OCD) do far outweighs any possible negatives though.

[Guest legend]

I , personally cannot see any harm what so ever, if ocd is put across correctly.

Ive seen a lot of peoples perspectives change, on what ocd is. I remember when I did my beard grow for ocduk, which went into the papers, and how

people were able to talk about it to me, not mine as such, more so of partners or people that they know.

In fact , from doing that article in the paper, I was made aware of a person locally who was showering up to 14 hours a day, and had been let down by the

local gp.

I advised the family of what actions to take, i.e going to another gp, request cbt etc.

Within 6 months that persons ocd had gone from a 10 down to a 1 , in fact these days he functions very very well indeed.

So imagine if you did a play, or a talk about Peado type fears, what impact that could have on people who are needlessly suffering , because a) its the

secret illness and b) they are to fearful to talk to pros. because its not often discussed on the tv/media, however I have seen articles of this type

of ocd.

Awareness matters immensely, and we have to keep perservering with it, regardless of flavour.

legend

Edited August 4, 2013 by legend

[Steven_in_the_clouds]

I agree that awareness matters immensely. I have had this fear before and I have also had lots of other OCD obsessions, including HIV, homosexuality, fear of schizophrenic, health fears, etc. However, despite not having any of these fears any more, it is the fact that I've had the paedo fear that can still make me feel awful, even if it was OCD. This is because I feel like I have to keep it hidden because people might actually think I'm terrible person. And I obsess that having had this obsession will ruin my life, despite me not having it anymore! I feel sad because I think it is something that people aren't willing to discuss. In reality, there is very little to be confused about if a proper explanation is given. I've told at least 15 people about this fear: a mixture of friends, family, and health professionals. As yet, I've not received a bad response. OCD involves repetitive fears/thoughts about things that terrify you. There is nothing more terrifying than the prospect of being a paedophile. It is no different than other OCD fears except the content. If I had kids (and I hope to one day), I would tell them when they grew up. It is just a terrifying fear. I think that the positive consequences for talking about it far outweighs any negative. I think it's more important for the word to get out that no one with this kind of OCD (like the harm OCD) would ever act on their thoughts. Also, I very much doubt a tabloid would hound someone diagnosed with a recognised mental health condition that is not a danger to anyone. Post-Levenson, that would be stupid and they would likely get chastised and sued.

That said, I certainly wouldn't have the courage to do so myself unless my name was witheld! I work in a reasonably high profile job and I'd worry about what would happen if my OCD came out. I have enough problems telling women about it if I meet one I like!

Also, re. what Ashley said, I agree that anyone who talks about OCD is a hero. They are putting their head above the parapet and it's not an easy thing to do, whatever their flavour of OCD.

Re. Tricia's play I'd recommend you do it (as long as it's accurate). I think that it's more likely that it wouldn't get commissioned than it would cause any harm, because it wouldn't be seen to be commercial enough.

[ConfusedBoy18]

The reason I said it is I am sick of every time there is a programme with OCD, someone comes along and says XYZ was not covered, which I find such a slap in the face for the bravery of those that took part. It's getting to the point where I am actually scared to put someone forward for media work if they suffer with contamination fears, because of the negative comments about their story from within the OCD community about that fact is it is not XYZ type of OCD.

We had six people on this programme with six different forms of OCD. Instead of celebrating a great OCD programme, showing different forms (inc harm OCD thoughts), we get people comment about the one thing that was not covered and I am just getting so annoyed by it.

Whilst I 100% agree it would be nice to see such stories covered, again I can only repeat that it can not happen until someone is prepared to share their story. There are of course ways and means to ensure the story is told accurately, and depending on the media outlet, sometimes it can be done anonymously like Legend bravely did.

But, I also respect that this is a difficult subject to talk about publically, and I would never ever want to pressure anyone to do so, until they are 100% ready, and even then I would push you to make sure you were in fact 110% ready.

I just hope that the next time we have a programme about OCD, instead of focussing on what was not covered, instead we focus on the bravery of those sharing their stories, whatever form of OCD.

Because it is infuriating that the form of OCD which is most common (being purely obsessional) is never covered throughout the mainstream media, because it isn't overtly noticeable. However good these programmes are doing to raise awareness for OCD, they are not comprehensive, and comprehensiveness is vital. I am certainly not undervaluing the awareness being raised by these sufferers for OCD - in general, but it is time we took a wider look at OCD. We included information on less known forms. I have to explain myself so hard to so many people because they just do not understand OCD. I have nearly killed myself because I thought I was a serial killer and paedophile. I have lost a great deal of my life due to this disorder, and for people to underestimate the severity and broadness is unfair and ignorant.

I have a video online where I discuss my form of OCD. http://www.youtube.com/watch?v=WFJdyZjA-9U&feature=c4-overview&list=UU7NO-1QDOk5czWWsZHn70fQ

Edited August 5, 2013 by Ashley
Reviewed video to add back in

[Steven_in_the_clouds]

Hi confusedboy,

Just had a look at your video. It's incredibly brave to put that online and actually seeing it there helped me as well. I've had a lot of the same obsessions that you have had. I remember looking on the internet all the time for personality disorder stuff too when I was first diagnosed - I was convinced I had narcisitic personality disorder! Just seeing you talk about it makes it so obvious that it's all OCD too. I don't see how anyone could misunderstand that video. Well done.

S

[Guest orange socks (2)]

Because it is infuriating that the form of OCD which is most common (being purely obsessional) is never covered throughout the mainstream media, because it isn't overtly noticeable. However good these programmes are doing to raise awareness for OCD, they are not comprehensive, and comprehensiveness is vital. I am certainly not undervaluing the awareness being raised by these sufferers for OCD - in general, but it is time we took a wider look at OCD. We included information on less known forms. I have to explain myself so hard to so many people because they just do not understand OCD. I have nearly killed myself because I thought I was a serial killer and paedophile. I have lost a great deal of my life due to this disorder, and for people to underestimate the severity and broadness is unfair and ignorant.

Your video is excellent hunny .

I can understand that you want all the aspects of ocd covered in the media. I think Ashley has a list of people willing to share with the media when they approach him. You should go on this list love ..... You are excellent at explaining and thank you for your bravery and honesty ....... 1 of the best videos I have seen . Well done

[Ashley]

Because it is infuriating that the form of OCD which is most common (being purely obsessional) is never covered throughout the mainstream media, because it isn't overtly noticeable. However good these programmes are doing to raise awareness for OCD, they are not comprehensive, and comprehensiveness is vital. I am certainly not undervaluing the awareness being raised by these sufferers for OCD - in general, but it is time we took a wider look at OCD. We included information on less known forms. I have to explain myself so hard to so many people because they just do not understand OCD. I have nearly killed myself because I thought I was a serial killer and paedophile. I have lost a great deal of my life due to this disorder, and for people to underestimate the severity and broadness is unfair and ignorant.

I am not sure that is accurate Nathan, on several fronts. Looking at the comment that Pure O is the most common form of OCD. The NICE guidelines state that Sexual thought obsessions (e.g. being a paedophile or a homosexual) are only suffered by 5.5% of those with OCD. Later data may have changed that of course.

But, stats aside, if we are looking wider at intrusive thoughts, you do realise you are actually wrong in suggesting other aspects of OCD have not been covered don't you? I think it covers almost 40% of our media work over the years. Just because you have not seen them covered does not mean they have not been covered. Diana told her story across all media outlets, BBC Breakfast, This Morning and in national newspapers like the Times, those are very major national media outlets. Legend also spoke about his OCD on local Radio. In this programme, Imogen talks about Harm OCD too.

Any programme that tells an individuals story can only tell their story, and I think Extreme OCD Camp does that really well. For the record, I have told all of this years OCD programmes about intrusive thoughts, and asked them to cover that aspect of the illness. From the point of view of participants, they can only work with what they have. As I say, please remember Imogen spoke about harm coming to her parents.

I have just watched your video, well done, we would be more than happy to add to our OCD and Me video series should you wish to submit it. One thing I would say is in the text you have said that with Pure O there is a lack of compulsions. I would perhaps edit that. because compulsions always exist, even if it is reassurance, avoidance, avodiance of places, people or objects and of course mental rituals, they are all compulsions, and every person I have spoke to with Pure O, as always had at least one of them, so perhaps that part needs rewording.

Happy to help you with the wording if you need it.

Regards,

Ashley

[Steven_in_the_clouds]

I have to say that I'm a bit dubious over the 5.5% figure quoted by NICE. I reckon that there is quite a large selection bias as people are very reticent about talking about this aspect of OCD. Online, "Pure O" seems to be the most prevalent anecdotally. Equally, when I went to a support group offline with c. 25 people (too many), it seemed that up to half of the people had had a sexual element to their OCD.

Agree completely over the fact that it is not purely obsessional. The compulsion tends to be rumination, checking, avoidance, and reassurance seeking.

[ConfusedBoy18]

I am not sure that is accurate Nathan, on several fronts. Looking at the comment that Pure O is the most common form of OCD. The NICE guidelines state that Sexual thought obsessions (e.g. being a paedophile or a homosexual) are only suffered by 5.5% of those with OCD. Later data may have changed that of course.

But, stats aside, if we are looking wider at intrusive thoughts, you do realise you are actually wrong in suggesting other aspects of OCD have not been covered don't you? I think it covers almost 40% of our media work over the years. Just because you have not seen them covered does not mean they have not been covered. Diana told her story across all media outlets, BBC Breakfast, This Morning and in national newspapers like the Times, those are very major national media outlets. Legend also spoke about his OCD on local Radio. In this programme, Imogen talks about Harm OCD too.

Any programme that tells an individuals story can only tell their story, and I think Extreme OCD Camp does that really well. For the record, I have told all of this years OCD programmes about intrusive thoughts, and asked them to cover that aspect of the illness. From the point of view of participants, they can only work with what they have. As I say, please remember Imogen spoke about harm coming to her parents.

I have just watched your video, well done, we would be more than happy to add to our OCD and Me video series should you wish to submit it. One thing I would say is in the text you have said that with Pure O there is a lack of compulsions. I would perhaps edit that. because compulsions always exist, even if it is reassurance, avoidance, avodiance of places, people or objects and of course mental rituals, they are all compulsions, and every person I have spoke to with Pure O, as always had at least one of them, so perhaps that part needs rewording.

Happy to help you with the wording if you need it.

Regards,

Ashley

But those are simply statistics, Ashley. They fail to take into account those sufferers who are undiagnosed. I have spoken to many different production companies in the past few years, and the programmes they have produced have never adequately addressed the broadness of OCD. Although I understand how difficult it must be to portray the many different types of OCD, especially those types which seem to lack overt compulsions.

I am starting on a short documentary on "Pure-OCD" soon, which I hope will help spread some awareness. Thank you for your comments on the video. I have just edited the text, I didn't even realise I have put that. I have changed it to "without any overt compulsions".

[Ashley]

I have to say that I'm a bit dubious over the 5.5% figure quoted by NICE. I reckon that there is quite a large selection bias as people are very reticent about talking about this aspect of OCD. Online, "Pure O" seems to be the most prevalent anecdotally. Equally, when I went to a support group offline with c. 25 people (too many), it seemed that up to half of the people had had a sexual element to their OCD.

Yep, could well have changed, it's quoted from a 1995 paper, so I will try and find out if there are any later stats. I agree as well about a support group having 25 people, just far too many people. I think 8-12 is the ideal number. I once had that many people back at my old Nottingham group years ago, I think if it happened again I would have ot break the group in two.

[Ashley]

I am starting on a short documentary on "Pure-OCD" soon, which I hope will help spread some awareness. Thank you for your comments on the video. I have just edited the text, I didn't even realise I have put that. I have changed it to "without any overt compulsions".

My pleasure, glad to help.

The problem is though that Pure OCD is very misleading, and technically it does not really exist. If we look at Imogen for example, she has what we would commonly think of as a 'Pure-O' type of OCD, of harm coming to her parents. But in the show we clearly see her tapping at things, which is of course the compulsion. The same with Paedophille and Homesexual OCD, I think I often read of people watching straight porn, just to prove to themselves that they are straight. So I think we have to be really careful in saying that compulsions rarely exist, they do, just less obvious.

Just my thoughts

[ConfusedBoy18]

My pleasure, glad to help.

The problem is though that Pure OCD is very misleading, and technically it does not really exist. If we look at Imogen for example, she has what we would commonly think of as a 'Pure-O' type of OCD, of harm coming to her parents. But in the show we clearly see her tapping at things, which is of course the compulsion. The same with Paedophille and Homesexual OCD, I think I often read of people watching straight porn, just to prove to themselves that they are straight. So I think we have to be really careful in saying that compulsions rarely exist, they do, just less obvious.

Just my thoughts

Yes, of course they exist. The seeking constant reassurance is very prevalent, but how do we adequately express these forms of the disorder if we do not categorise them as subtypes? How can we express the difference between a person who is afraid of contamination, and a person who is scared they are going to kill a loved one? Although the anxiety is the same, the subject is completely different.

Edited August 5, 2013 by ConfusedBoy18

[Guest orange socks (2)]

Did the legend do the radio interview on pedeophile thoughts ? I couldn't find it anywhere on the play back thingie ......I could only find a guy called Tom talking about ...... I think it was health anxiety ?..... though I didn't listen to the end.

Anyway I have seen lots of media coverage of other types of ocd and mentioned it myself whenever i have had the chance. Did a show with a lovely guy who had thoughts that he was gonna hurt elderly people and his family ...... He actually got so bad that he barrackaded himself in his room every night so he couldn't get out to harm anyone.

When that stopped working he actually broke into places and sat waiting for the police to arrive so that they would arrest him and put him in jail where he could harm no one. That's how bad his got bless him. I assume he won't mind me sharing his story as he spoke on national tv about it.

Ye...... Other types of ocd has been covered ...... I know a few people who have spoken about it .

I should imagine , as far as statistics go, many people do not disclose the nature of their thoughts even to mental health professionals for fear of being misunderstood ......so I reckon the incidence of these thoughts is higher than we think.

Think it's a good idea that the gp ice breaker letter is going out on this subject as its hard enough to disclose about more understood forms of ocd .

Edited August 5, 2013 by orange socks (2)

[ConfusedBoy18]

Did the legend do the radio interview on pedeophile thoughts ? I couldn't find it anywhere on the play back thingie ......I could only find a guy called Tom talking about ...... I think it was health anxiety ?..... though I didn't listen to the end.

Anyway I have seen lots of media coverage of other types of ocd and mentioned it myself whenever i have had the chance. Did a show with a lovely guy who had thoughts that he was gonna hurt elderly people and his family ...... He actually got so bad that he barrackaded himself in his room every night so he couldn't get out to harm anyone.

When that stopped working he actually broke into places and sat waiting for the police to arrive so that they would arrest him and put him in jail where he could harm no one. That's how bad his got bless him. I assume he won't mind me sharing his story as he spoke on national tv about it.

Ye...... Other types of ocd has been covered ...... I know a few people who have spoken about it .

I should imagine , as far as statistics go, many people do not disclose the nature of their thoughts even to mental health professionals for fear of being misunderstood ......so I reckon the incidence of these thoughts is higher than we think.

Think it's a good idea hat the gp ice breaker letters going out on this subject as its hard enough to disclose about more understood forms of ocd .

I think I must have been extremely lucky, because it was my doctor (who is a fantastic man) who recognised I have OCD. I was seeing him all the time, worrying about all sorts. I even disclosed to him that I was worried I was a paedophile. He insisted it was OCD, but I didn't believe him.

Edited August 5, 2013 by ConfusedBoy18

[Ashley]

Yes, of course they exist. The seeking constant reassurance is very prevalent, but how do we adequately express these forms of the disorder if we do not categorise them as subtypes? How can we express the difference between a person who is afraid of contamination, and a person who is scared they are going to kill a loved one? Although the anxiety is the same, the subject is completely different.

The subject is of course very different, you are right, but putting the subject into sub-types is the wrong approach Nathan. For example, at my group in Nottingham last week, I had people talk about paedophile thoughts, relationship thoughts and homsexual thoughts, yet all of those people also said their OCD changed and shifted to a different form of the illness. So this is the danger of using 'sub-types' we forget that what we suffer with is not the sub-type, but OCD.

I myself suffer with contamination OCD, but last month I drove over 50 miles just to 'check' something, so for whatever reason, OCD struck me in a different form for one day. So the thing to remember is I suffer with OCD, not conamination OCD or checking OCD.

Of course, it is ok to talk about the specific subject of OCD that you have, that is the perfect way to raise awareness and I can help you do that if you want to, but we must never forget that what it is, is OCD, not pure-o.

Ashley

[Ashley]

I think I must have been extremely lucky, because it was my doctor (who is a fantastic man) who recognised I have OCD. I was seeing him all the time, worrying about all sorts. I even disclosed to him that I was worried I was a paedophile. He insisted it was OCD, but I didn't believe him.

Wow that is amazing, you were indeed so lucky there, and what a great difference to hear of a knowledgable doctor.

[Steven_in_the_clouds]

I've been with three gps so far and all have known about ocd and that the paedophile fear exists. My original gp ten years ago didn't diagnose me but passed me to a psychiatrist who did very quickly when I listed my history of obsessions. he was a fantastic help. My obsessions have changed several times over the years do I agree that ocd is ocd.

I do worry now that with cmht teams (I have never seen one), the mental health staff are going to be less knowledgeable as often the first person you see is a nurse or social worker rather than a psychiatrist.

[Northern Star]

I do worry now that with cmht teams (I have never seen one), the mental health staff are going to be less knowledgeable as often the first person you see is a nurse or social worker rather than a psychiatrist.

I know it can be hit and miss as to whether the person you see is knowledgeable on OCD. But on the subject of it being a nurse you might see first, my CPN is fantastic. He is (with perhaps the exception of the Prof) the best person I have ever worked with out of a list of psychiatrists, psychologists, etc etc. I have worked with people with more qualifications, with more letters after their name, earning far more than he does, yet he has the one thing you can't learn from a textbook - empathy. Even though he is not an OCD expert he has taken the time and effort to understand it.

[Steven_in_the_clouds]

Fair enough. I suppose I'm just nervous cos I've not seen a cpn and was originally diagnosed before cmhts existed. Also I obsess about my ocd being misunderstood so I'm always going to worry about this whether it's rational or not.

I agree that empathy is very important.

my doctor now thinks that because the ocd is under control enough for me to hold a decent job down and have friends etc, that I shouldn't see a cmht because they just see bipolar or schizophrenic who are more ill than me. However ocd is still very much there. anyway, this is going off thread so I'll be quiet!

[ConfusedBoy18]

I know it can be hit and miss as to whether the person you see is knowledgeable on OCD. But on the subject of it being a nurse you might see first, my CPN is fantastic. He is (with perhaps the exception of the Prof) the best person I have ever worked with out of a list of psychiatrists, psychologists, etc etc. I have worked with people with more qualifications, with more letters after their name, earning far more than he does, yet he has the one thing you can't learn from a textbook - empathy. Even though he is not an OCD expert he has taken the time and effort to understand it.

I think this is part of the problem - they have the correct education, but lack the interpersonal skills. Although my GP was fantastic, I have had to deal with some very inept psychiatrists. One (who was Eastern European, If I remember) told me it "wasn't normal to be having these thoughts" and I "have to stop thinking about 'these' things".

[Steven_in_the_clouds]

Well it sounds like in this case, your psychiatrist didn't have the correct education. If they are telling you to stop thinking about these things, they don't know about OCD. That is the worst possible advice, as the point is to not respond to the thoughts and give them more importance than they are worth when they are meaningless. It surprises me that psychiatrists who are supposed to be experts don't know about this, when OCD is one of the most common mental illnesses. It makes sufferers feel very guilty saying this kind of thing when they have done nothing wrong. If I had been told that when I was first diagnosed, it would have made me suicidal. I hope you had some good psychiatrists and got referred to CBT.

[Guest Icicle]

Just watched this program and thought it was absolutely brilliant, all 6 of them did so so well, and it made me realise how far I have come with my own treatment. I can totally empathise with them during their exposures. I thought it portrayed the power of ocd extremely well, I felt myself getting anxious for them.

Really well done, I wish I could find a support group like that

[Mel1971]

my doctor now thinks that because the ocd is under control enough for me to hold a decent job down and have friends etc, that I shouldn't see a cmht because they just see bipolar or schizophrenic who are more ill than me. However ocd is still very much there. anyway, this is going off thread so I'll be quiet!

Then you should say to him 'i accept your opinion but i want to be referred please' - dont allow these silly ignorant gps to stop you seeing somoene - i worked for a surgery and gps are just there to field for the specialists, if its something they can do they will, but if they cant then they must refer on - you have every right to see whomever you want.Specific mental health conditions are way beyond most gp's capabilities.

on the subject of pure ocd, i do think everytime i watch a programme about ocd that paedophile ocd or homosexual ocd will be portrayed too. As a non sufferer I can see it from both sides - how great it would be to expose that symptom of ocd -but again i can see ignorant people not listening properly or getting the wrong idea straight away before the information is out, When my husband had a breakdown years ago he begged me to tell his parents the true nature of his ocd symptom- and trying to explain to them that their little granddaughter had not been abused like that, they looked at me in anger, 'how could you let him near her' - eventually they calmed down and I dont think they understand really but they tend to pretend its not happening.

Legend is so brave, its an incredibly difficult thing to stand up and talk about - especially when its about your own children.

The programme was good, you could see the anxiety in them build up - i like the way it focused on that to show physical symptoms of anxiety, and not just 'so and so is worried about this- cut to next scene' - i do hope it helped all of them

[Steven_in_the_clouds]

the thing is some people will always get the wrong idea about something. I don't think that's a reason not to have it in the open. However, being open about it in the media yourself is another matter. I agree legend and confusedboy are very brave.

Re. me, I have had private cbt, so not sure what cmht would do. I just want to see a psychiatrist to tweak meds, but they are so busy it seems impossible to get referred and I'm not really interested in cpns and other support. Also, I'm worried about having to talk about the paedophile obsession when that worry stopped bothering me years ago.

All I worry about now is the stigma of having worried about it. this in itself is an obsession. The actual original paedophile obsession was a lot less worse than most have. I was in my early twenties and an obsessive worry developed that I fancied teenage girls. I didn't! The obsession passed when diagnosed with ocd. But I still have to live with the fact my medical records now say that I worried about being a paedophile. And be treated as a potential threat when I'm not. (or at least I worry I'll be treated as a potential threat).