Extreme OCD Camp

[whitebeam]

My friend remembered your name to tell me after she saw you on Daybreak, Ashley. I don't usually watch morning television so didn't see you but it sounds as if it was a good trail for the programme (which I shall be watching on iplayer - or whatever). She said you seemed a really lovely person :original: I told her you are :original:

[Northern Star]

Me? No, what I am trying to say is that anyone prepared to speak openly about their OCD on TV should be applauded, it takes a lot of courage.

There are probably a few reasons why intrusive thought / harm-type OCD is not shown as often - from a purely practical point of view it's easier to show someone compulsively washing their hands than it is someone ruminating over whether they may have stabbed someone. Also, although it shouldn't be it does seem somehow to be more 'socially acceptable' to reveal that you have to check the gas is off seven times before you can leave the house than it does to say that you have intrusive images that you might molest your new own child. They are all the same illness but it is so easy for what you say to be misunderstood or misinterpreted and for people to go away thinking that you actually ARE a danger to others when of course you're nothing of the sort.

In order for this type of OCD to be discussed more, people need to be willing to engage with appropriate media requests when they come in. I know it's so scary, but if people can say what it is that stops them then maybe we can look if any of those obstacles can be reduced or removed. My reticence on the subject is down to fear that I will say it 'wrong' and let sufferers down, that people will misconstrue it and think sufferers are dangerous.

That's what I was trying to say last night, don't think I explained it too clearly.

[Guest icallitmadness]

I agree with you Northern Star; we have to remember that most people DON'T UNDERSTAND OCD

So if any one of us goes out there saying to Joe Public that we have these thoughts (especially about children), there is not a chance they will understand from a snapshot on a one hour programme. It takes deep understanding, explanation and openness.

It's not about being ashamed, but understanding the risk you could be exposing yourself to. No one is going to be scared of someone who washed their hands 100 times, but they will go off the scale over something more sensitive.

I see programmes like this as a very good starting point for getting the message about OCD out there, but ther is a limit to what can be done in a short time, for people who probably have very limited or no understanding of OCD

[Guest Tricia]

I also agree with you, Jo.

I have been struggling to write a screenplay for years, with the main character an OCD sufferer who fears he is a paedophile. I’ve been so afraid of upsetting people, or of the public misinterpreting the symptom. Professor Salkovskis warned me there must be no ambiguity in the writing or production. He also said he had advised patients not to discuss this symptom in the media (for the reasons you have given, Jo).

The symptom desperately needs to be aired more, but by charities and professionals. An individual could risk everything by being so open.

I was discussing an OCD documentary with a film producer last week. One person involved fears he is a paedophile, but the producer has said in the interests of his safety, it would be better for the narrator, or a professional, to say OCD can include these kinds of thoughts, rather than for the person to discuss the nature of his intrusive thoughts himself.

I have received some very angry messages from fellow OCD sufferers who are adamant that I don’t go ahead with the play I am stalling over. One was a good friend of many years who said she will never speak to me again if I link this to OCD! Others have been the opposite, and said the symptom needs to be brought out into the open more. However, when paediatricians have had bricks thrown through their windows, it’s clear that it is a difficult and delicate subject.

P.S. Another expert advised me to change the protagonist to a person with OCD who fears he might stab or smother a child. He said this would help those who fear they are paedophiles (as they would see the similarity) and also be a ‘safer’ option. I’m not sure I agree with him, and those I’ve asked with fears of paedophilia have said that would not help them, they need their own symptom portrayed.

Edited July 31, 2013 by Tricia

[Guest Tricia]

P.P.S. And let's not forget Lowenstein and that awful newspaper article.

[Goldie80]

Darn it missed daybreak but just wanted to make my comments on the documentary.....

It was refreshing to see a full spectrum of 'types' of OCD and not just the classic cleanliness compulsions on show. I found the programme very emotional to watch as the anxiety was tangible and so easy to relate too. I was surprised at how strong the young people seemed and keen they were to stick at the 'camp'. I was glad to see clear exposure therapy being demonstrated on prime time tv and unlike many other similar documentaries it did not present the participants as a 'freak show' but rather as 'real' people with 'real' mental health issues that they are facing upto. I do worry about how mental health is portrayed by the media and I have a particular concern for young people and how they believe it may stigmatise them. This programme sensitively presented the group as functioning young adults with a mental health issue that can be tackled. At no point was it suggested that they would just 'have to deal with it' which in my experience has been a common misconception. It reminded me just how treatable OCD is and how much of an achievement it is to tackle it. Furthermore, each of the young people involved should feel real pride in taking part and facing the fear. I personally can't wait for episode 2. The only thing that saddens me is that the participants had to be flown to Seattle for the camp. We have some fantastic resources here in the uk, we just need more access to the treatment we all deserve.

Well done BBC 3 and the strong, inspiring participants.

[Guest thewelshdragon]

Thanks but i can't get BBC iplayer,was it good?

Yes it was. It only had one person with OCD and others with other mental health problems. It focused mostly on younger people getting access to mental health care and the problems with the transition people have moving from 'child and adolescent mental health care' to 'adult mental health care'

[Guest Leighbee]

hi Tricia its been a long time do you remember me?? its kinda ironic cos i wanted to tell my experience of being open about this type of OCD on this thread and you of course know my story already, I hope you are well.

For everyone else i suffer from this type of OCD and although i would like the world to understand me i have first hand experience of people not understanding. I used to work in a secondary school and following my volatile separation form my first husband, annoyomus letters were sent to the head of the school claiming i was a peadophile.my ex husband knew about my OCD and did this evil thing to get one over on me, which I told my employers i told them i have ocd and this is what my ex was refering to. To cut a very long story short my employers ask for access to my medical recordswhich beleiving people would understand gave them permission and an occupational health doctor who had no experience in mental health decided i posed a risk to children and i was sacked. I took my employers to tribunal which i won but .because i was sacked due to my unsuitability to work with children the department for safeguarding childern got invovled. i then had to fight to clear my name with them which i successfully did thanks to an OCD specialst getting involved. This took a bout 3 years from start to finish and the whole experience has increased the intensity of my OCD to servre.

I know i said i would like more programmes to feature this type of OCD because i get angry about what happened to me but i understand why it is a difficult area of OCD to speak about and personally i would be willing to tell my story but i would want to remain anonymous

Leigh

[daisy]

Thanks welshdragon,pity i missed it!

[Guest icallitmadness]

That's awful Leigh, I am so sorry you had to go through all that. Your ex should never have done that to you, and I am glad that you managed to keep fighting to get your name cleared. It just goes to show how much ignorance is out there, and that it only takes a little ignorance to go a whole lot of unnecessary damage.

Good for you for getting through it.

(I would add a hug emoticon if I could find it)

[Guest legend]

lady on radio cambs spoke about it yesterday, after my talk. re fear of harming/sexual stuff

went through what you did as well leigh as you know, but I did a tak about it, for ocduk last year

I will do it properly when my kids are older ,as in a full understanding. 2 years I reckon.

bring it on.

footnote ; I thought the programme was fantastic

Edited July 31, 2013 by legend

[Guest Elle Belle]

There is someone on there who has intrusive thoughts that they might hit someone. I think anyone who takes part in a program like this should be applauded for their bravery. It doesn't matter what type of OCD they have, OCD is OCD is OCD. For those people it will likely be the worst fear they can imagine.

Can you imagine going on national TV and telling people that you have intrusive thoughts that you might be a paedophile, with your family, friends and enemies watching it? Then one of them misses the point or is too ignorant to understand it and thinks you actually ARE a paedophile, it spreads around everyone who knows you, the tabloids get hold of it, you are harassed and hounded, all because either the TV company got it wrong or some moron watching it did? Speaking from my own experience it's scary talking to the media about any type of OCD; harm OCD, despite being the most common type, seems even more frightening to talk about, even with MH professionals. Yes we need more media exposure of the harm OCD types but in order for that to happen sufferers need to be willing to speak with good-quality, empathic and genuine media when requests come in.

Hear hear! Although I totally understand Miss OCD's original point too.

I watched the programme and I thought it was very good - it was really moving an would have given people who didn't know much about OCD an insight into how horrible it is to have and how just because you can't see a problem, doesn't mean it's not there,

E

x

[Guest legend]

I also agree with you, Jo.

I have been struggling to write a screenplay for years, with the main character an OCD sufferer who fears he is a paedophile. I’ve been so afraid of upsetting people, or of the public misinterpreting the symptom. Professor Salkovskis warned me there must be no ambiguity in the writing or production. He also said he had advised patients not to discuss this symptom in the media (for the reasons you have given, Jo).

The symptom desperately needs to be aired more, but by charities and professionals. An individual could risk everything by being so open.

I was discussing an OCD documentary with a film producer last week. One person involved fears he is a paedophile, but the producer has said in the interests of his safety, it would be better for the narrator, or a professional, to say OCD can include these kinds of thoughts, rather than for the person to discuss the nature of his intrusive thoughts himself.

I have received some very angry messages from fellow OCD sufferers who are adamant that I don’t go ahead with the play I am stalling over. One was a good friend of many years who said she will never speak to me again if I link this to OCD! Others have been the opposite, and said the symptom needs to be brought out into the open more. However, when paediatricians have had bricks thrown through their windows, it’s clear that it is a difficult and delicate subject.

P.S. Another expert advised me to change the protagonist to a person with OCD who fears he might stab or smother a child. He said this would help those who fear they are paedophiles (as they would see the similarity) and also be a ‘safer’ option. I’m not sure I agree with him, and those I’ve asked with fears of paedophilia have said that would not help them, they need their own symptom portrayed.

I spoke openly in my talk regards a fear of sexually abusing albeit in front of a small crowd, and professionals

I wont do it at the moment because my daughters 13 so its unfair , I feel

when the times right ill talk about it openly. bring it on, its ocd , same meat just different gravy

One must remember, I think its not a fear of being a peado, its fear that you might act innapropiatly to a child, or you may have, in a sexual way

[whitebeam]

You guys are kidding me right?

I'm surprised you have said this.

It must be the hardest type of admission to say you fear harming/abusing others - esp children.

We know that the fears are unfounded (even if we 'believe' them) but others don't have that same understanding.

[whitebeam]

P.P.S. And let's not forget Lowenstein and that awful newspaper article.

I'd be interested to see this - been out of touch for a while.

pm me if you want with the details.

Edited July 31, 2013 by whitebeam

[Guest Tricia]

Whitebeam, I've sent you a link to the article.

Legend, Many of those with this OCD symptom do fear they are actual paedophiles. I've discussed it in depth, for my research. One of my closest friends has even gone to her doctor and announced she is a paedophile.

In the past, the same person went to her GP and said she was going to harm her children, the doctor reassured her she was safe and that it was a symptom of her OCD. It is surprising how the same GP, who recognized that as OCD, reacted very differently when sexual abuse was mentioned. Obviously that’s not the case with all professionals, but it does happen.

It will be difficult to convince the public, I feel. My own daughter had incredible empathy with all symptoms of OCD, bar the paedophilia one. It has taken me many years and a very dear friend of ours, with this symptom, to change her mind and make her see it for what it is.

If it were one of my symptoms (which many believe it is, due to my discussing it regularly) I don’t think I would ever want my children to know, even though they are in their thirties, as I think they would imagine the kinds of images I may have had of them and be distressed.

[Guest Tricia]

Leigh, How very good to hear from you. Yes, of course I remember you! I am so sorry to hear your OCD is now severe.

I think your story would do so much good, but obviously you would need to remain anonymous. There will always be those who will fail to understand, no matter how much information is put out there, and anyone speaking about this publicly, without anonymity, would be placing not only themselves at risk but their loved ones.

xx

[Ashley]

My friend remembered your name to tell me after she saw you on Daybreak, Ashley. I don't usually watch morning television so didn't see you but it sounds as if it was a good trail for the programme (which I shall be watching on iplayer - or whatever). She said you seemed a really lovely person :original: I told her you are :original:

Do you mean me Penny? I was on BBC Breakfast, rather than ITV Daybreak, the link is on the thread somewhere

[Guest legend]

yep tricia , I had the fear I had sexually abused the kids when they were babies, so fully understand , and yep I suppose it is a fear of being a p

I will do a talk on it, and wont let others judge me , because I have had ocd (6 years free now)

[Goldie80]

Interesting to read all this. I am just agreeing really that it needs to be spoken about but that the subject needs to be handled appropriately and sensitively. I honestly believe If presented factually and with sympathy most of the public would understand the nightmare that must be this particular fear. However, as legend says OCD is OCD and the more the public can learn that it isn't just about hand washing the better. Very intrigued by the screen play Tricia. I work in this field so if you want someone to dramaturg it or just offer opinions please do pm me. I am very much in support of this.

[Guest orange socks (2)]

Well according to the official figures ....if digital spy is seen to be reputable ? BBC Three's new documentary series Extreme OCD Camp interested 528k (2.4%) at 9pm.

That's not too bad is it...... Not too bad at all .

[NelsonB]

Well according to the official figures ....if digital spy is seen to be reputable ? BBC Three's new documentary series Extreme OCD Camp interested 528k (2.4%) at 9pm.

That's not too bad is it...... Not too bad at all .

Wow that's really good! Hopefully people actually know about OCD now and the effects of it

[Ashley]

I think BBC Three deserve praise for commissioning this series, despite perhaps lowly figures compared to Channel 4s, 2 million for OCC. Channel 4 made it clear to me in the meeting they would rather make a more entertaining programme to being in 2 million, than a more serious documentary that only brings in 500k, which is indicitive of how they think. Ironically, IU think Extreme OCD Camp was actually better more interesting and entertaining TV than OCC.

[felix4]

Quote whitebeam, on 01 Aug 2013 - 12:32 AM, said:

I'm surprised you have said this.

It must be the hardest type of admission to say you fear harming/abusing others - esp children.

We know that the fears are unfounded (even if we 'believe' them) but others don't have that same understanding.

Me too,

I should imagine those that sufferer with this particular theme surely have the roughest ride of all. Having suffered a wide range of themes over the years, I am not a believer that all OCD is the same regardless of theme.

Quote Tricia, on 31 Jul 2013 - 3:04 PM, said:

I have received some very angry messages from fellow OCD sufferers who are adamant that I don’t go ahead with the play I am stalling over. One was a good friend of many years who said she will never speak to me again if I link this to OCD!

Hi Tricia,

I'd be interested to know what themes these fellow sufferers have. If done on a forum, is there any way of verifying if the messages were from genuine people? I know that sometimes people with hidden agendas post under different guises with multiple accounts, & if it is done via PM, I'd be even more questionable.

I guess the main thing is, you need to weigh up all the pro's & cons, & do what you feel best, & not be deterred or pressurised for that matter, into doing stuff that others would probably would not do themselves.

Best of luck with it all.

xx

Edited August 2, 2013 by felix4

[Ashley]

I'm surprised you have said this.

It must be the hardest type of admission to say you fear harming/abusing others - esp children.

We know that the fears are unfounded (even if we 'believe' them) but others don't have that same understanding.

Me too,

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.