OCD Action

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Dear OCD Action members

Can you help write the book on OCD?
Some OCD Action members have taken on board a massive challenge; to write a book on OCD from the perspective of a person with the disorder. They need your help.

The objective of this questionnaire is to create the framework for the book that is being written by and for people with OCD. All profits from the book are going to be donated to fund OCD charities and organisations such as OCD Action and the International OC Foundation in the US , as well as a few others. Although the target market of this book will be people with OCD, it is also hoped that it will be bought and read by those who live with and care for them, including parents, partners, friends and therapists.

The book will include a wide range of secondary resources including statistics regarding the prevalence of OCD, the success rates of treatment, the NICE Guideline, and advice given by academics in the various self help books. But it will mainly be based on primary resources including the answers to this questionnaire, personal stories and diaries from sufferers written specifically for this book and the answers to a series of mini-surveys.

So by completing this questionnaire, you can play a massive part in helping this book to be a success.

There are two version of the questionnaire - an online version and a manual one. The online version should take less than 30 minutes to complete. You can access both questionnaires direct from this site under the heading 'The Book' which is in blue print under the heading 'What's New' to the side of this page as well as on the Press and Media page. The questionnaire is totally confidential - it neither asks for your name nor your gender.

If you have any other questions please feel free to contact us at ocdsurvey@btinternet.com.

Very many thanks

Anne and friends

Tue Jun 1 2010 7:44:56 #
Unregistered

ps sorry folks it is under 'OCD Survey' on this page.

Tue Jun 1 2010 8:06:26 #
Tess
Member

Calling all support group leaders and all members of OCD Action and anyone else with OCD who reads this. As a support group leader myself I would like to ask all support group leaders to please tell their members about the book which Anne is in the process of writing and to encourage them to complete the questionnaire which has been launched this morning. Please also forward details to any other contacts you have in your area. I have done this for Cornwall, lets make it countrywide.
This is an amazing project, I personally believe it will be a major step in increasing understanding of OCD and changing stigmatised attitudes. Even yesterday I was incensed by an item on BBC breakfast news when someone talking about Sherlock Holmes referred to OCD as a "flawed personality". Anne has been working tirelessly for the last four months, now she needs you to complete the questionnaire. Lets make it a bumper response.

Tue Jun 1 2010 10:12:34 #
poppyfields
Member

Done mine Anne

Tue Jun 1 2010 17:36:53 #
Unregistered

Hi all
Thanks so much to those of you who have completed the online survey over the last 6 days. We have received entries from the UK, and the US as well as from other countries. They have been completed by OCDers with most of the different sub-types. The comments are beautifully written and show wonderful insight.

Of great interest to me, personally, have been the various definitions of OCD which you have provided. To name but a few you have suggested: ‘Who I am, but not too crazy;’ ‘A brain condition that makes me eccentric;’ ‘I’ve foibles and don’t always think the same as anyone else;’ and last but not least: ‘Exasperating as they just don’t get it!’ We have decided to use some of these, and others not mentioned, as headings for chapters.

We have received just under 40 completed surveys but still need at least 60 more. Please do consider setting 30 minutes of your time aside to share your thoughts, tips, aspirations and definitions with us.

Many thanks

Anne and friends

Sat Jun 5 2010 14:48:03 #
poppyfields
Member

If you've not already done so, then please, please do the questionnaire for Anne. She's hoping for 100 and not half way there yet. We need everyone to partake as we are all different with our ocd and the better the mix the better the book. Many thank yous. Pops

Sat Jun 5 2010 17:00:19 #
Unregistered

Hi all

Just to say that I think there have been problems with people not being able to access all 10 pages of the survey on the US Forum. If you do have similar problems please can you PM me.

In the meantime, thanks to all of you who have joined in today.

I also felt you might like to know that we have support from Professor Frederick Toates (Prof of Biological Psychology at the Open University). He has most kindly advertised this survey on two OU student sites this morning. I would highly recommend his book 'Obsessive Compulsive Disorder: Practical, tried-and tested strategies to overcome OCD.' Because he is a fellow OCD sufferer, he has a genuine understanding of our condition and covers a lot of the aspects we are dealing with in our survey. The book is easy to read, and gives a great deal of useful advice.

Anne and Friends

Sun Jun 6 2010 14:29:18 #
poppyfields
Member

Just hitting this to the top again in case anyone hasn't filled out the anonymous questionnaire yet. Pops

Sat Jun 12 2010 9:02:04 #
Unregistered

Hi all

This is my weekly update on the survey. We have received 84 completed online surveys from all over the world and are truly delighted. I have also been offered support from around 15 self help group leaders in the UK and Northern Ireland - which is amazing. I have missed this month's meetings but hope to get some manual questionnaires back in a month or so. I am in the process of setting up a PO Box and will let you know the details next week.

Over 75 percent of those who have filled in questionnaires are over 25 - it would be great to hear from some of you young adults.

The survey is producing interesting results. All sub types of OCD have been reported. But, most of all, what the surveys do show is that we are all individuals and that what works for one does not necessarily work for others. As such, recovery takes a different variety of building blocks for each one of us. This will be reflected in our book.

If you have not filled in a survey so far, please consider putting 30 minutes of your precious time aside to do so. This can potentially make so much difference to our futures.

Very best wishes

Anne and friends
ps we are now aiming for 200

Sat Jun 12 2010 17:58:39 #
Unregistered

Hi all

The address for returning manual questionnaires is

Anne Watkins, Questionnaires
PO Box 338
BARNSTAPLE
EX32 2DT

sorry for the long delay

Very best wishes

Anne and friends

Fri Jun 25 2010 19:42:41 #
Unregistered

Dear all

I thought you would be pleased to know that PD Dr Michael Rufer (University of Zurich), who is the president of the Swiss Society of OCD, has agreed to promote our survey on his forum. He believes this is a 'really important project.'

We nearly have the hundred completed surveys now - but are still aiming for 200 fully completed ones. They need to be complete to be of use to us as we are going to analyse them for the book. So, if you have not already done so, please consider spending 25 minutes on our survey.

The last question asks for a definition of OCD. Mine has been inspired by Truddles' many great ideas and will probably be the title of our book it is:
'The Bully that Cannot be Silenced.'

Can you beat this anyone?

Many thanks

Anne and friends

Wed Jun 30 2010 9:37:25 #
Tess
Member

This is brilliant news. Anne's project is now going international. This survey gives sufferers the opportunity to explain what it is like to have this illness and how effective the various treatments on offer have been. It goes a lot further than this covering questions about relationships and everyday living which will ring bells with all sufferers because we know what OCD is like from the inside, something the psychiatrists cannot understand as well as we do. At last, through the internet we can have a combined voice and I believe Anne's book will be a very important step in helping other sufferers in the future by increasing knowledge about this wretched condition.

I have had OCD for over 40 years, I have been through many different treatment processes and I still don't believe the medics have all the answers - far from it. I have, along with many others, been a human guinea pig for the last 40 years, trying out many treatments, each time with personal hope of a 'cure', most of which have proved ineffective and which are now recognised as such. Some 'therapy' I have been through and some of the things psychiatrists have convinced me in the past such as my OCD was caused by strict potty training (late '60's early '70's) are now treated with derision. We can help to eliminate useless therapies which squander NHS resources and ensure that the therapy on offer is the best available - but in order to do so we all need to speak out and say what has worked and what hasn't.
This book provides the opportuntity to do this and Anne has been working on it tirelessly. She is contributing huge amounts of her time and resources and all proceeds will go to OCD charities. Please help to make it a huge success by completing the questionnaire as the more people who contribute the more weight it will carry.

Wed Jun 30 2010 10:20:53 #
Wombat140
Member

That's great news about the Swiss society - well done Dr. Rufer!
This book really will be a great step forward when it's ready. I'm always noticing things that mysteriously aren't covered by any "expert", and wishing I could tell them about it... well, now I can!

Anne, have you considered asking OCD-UK if they'll promote your survey? Their forum is busier than this one. There's also an American forum called Latitudes, which deals mainly with alternative treatments for OCD, autistic spectrum disorders, tics and what not. They usually welcome research questions, although you have to ask the moderator's permission first.

Good luck!
Wombat140

Wed Jun 30 2010 17:18:48 #
Unregistered

Many thanks Tess and Wombat for promoting the survey,

Wombat, I will have a try at those forums. I am also currently awaiting a reply from the German forum.

Incidentally, I am going to pour myself a celebratory glass of champagne as we have just received the 100th complete questionnaire.

Best wishes and many thanks to you both for your support and to all those who have completed the survey or sent in personal stories/chapters etc.

Please keep them coming

Anne and Friends

Wed Jun 30 2010 19:53:29 #
Nimrod
Key Master

Hope you enjoyed the Champagne Anne.

With holiday time approaching don't forget to make some time to complete the questionnaire if you haven't already done so.

Caps

Mon Jul 12 2010 8:03:58 #
Unregistered

Hi all,

Over the next few weeks I want to tell you how mutually beneficial this survey has proved to be so that those who have not filled it in so far can see some of the advantages for us all of joining in.

One of my favourite sections in the questionnaire is section 6 on ‘Self Esteem’. This is because, since the start of my current relapse, I have noticed more and more how certain situations trigger an attack and therefore how to avoid them, or, if this is not possible, ask for help in coping. I know that I have not mentioned all the triggers – for instance PMT was an obvious one. I hope one of you who finds this is a major trigger will consider writing a small section on this for the book.

The triggers I have focused on range from anger to feeling overly responsible for others – two of my main ones. For me it seems that these two triggers lead to guilt and this worsens the situation. Someone summed up this problem with anger brilliantly:

‘When people make me angry and I retort in an angry way, I get stressed out because I feel like I was being mean and evil. I don't want to be an evil person.’

Feeling ‘overly responsible for others’ seems to strike a chord in a lot of you, as over two thirds of you felt this was a major trigger. Yet, not all of your realised that this was an issue for you. As one writer put it:

‘I actually never thought much about the "feeling overly responsible" aspect, but when I saw it on the list I knew immediately that my stress skyrockets when I feel unable to meet the needs of family members who I think are counting on me. I must consider the meeting of their needs a responsibility.’

Please let us know what triggers your OCD and tell us, in the coping section in Section 10, if you have found successful ways in dealing with these issues.

Very best wishes

Anne and friends

Wed Jul 14 2010 11:29:58 #
Unregistered

ps If you are from the US and would like to fill in a mini survey regarding your experience of the medical system in the USA please PM me.

Wed Jul 14 2010 13:09:51 #
Nimrod
Key Master

Hi Anne and Friends,

Thanks for posting that update and those snippets from the responses as it is so reasssuring that so many of us have similar feelings and reactions. I do hope that people will say how they manage to cope and that you post a few examples to give us a taster of how they cope - I can't wait for the book as I think there will be so much in it and not from the so called experts, but from the real experts, the sufferers who really know how it is. So if you haven't already completed a questionnaire please do so as soon as you can.

Best wishes,
Caps

Wed Jul 14 2010 20:05:07 #
Unregistered

Hi Caps, Hi guys

I have picked out some of my favourite coping mechanisms. They really DO make sense.

‘If OCD is "walked over" continuously it will result in an explosion of anger which appears unreasonable and irrational to others. The secret is to make others aware of how their actions and behaviour are affecting the OCD before it reaches the stage of an uncontrollable outburst of anger.’

‘Say no to stress - walk away from it, turn your back. If you can't say no then don't say yes, ask for time to think it through which will help you to be able to reach the correct decision for your own wellbeing.’

‘My most effective coping skill is to look around at other people, especially other moms and see how they are behaving. I try to model myself after them.’

And if all else fails: ‘I sometimes say: ‘this time OCD wins: next time I will.’ I then am not angry or guilty for doing the thing and this means less pressure, so my stress levels don’t increase.’

As you can see, WE are the EXPERTS: WE have so much to learn from EACH OTHER. It is clear from the survey that finding the triggers and dealing with them effectively will make so much difference to controlling our OCD. Please fill in the survey and help others who are not in a position to help with Our Book at present or who do not have access to the internet.

The more answers we get the more our survey will hold weight.

Love
Anne and Friends

Fri Jul 16 2010 12:00:23 #
Unregistered

ps. Forgot to say that we seem to be stuck on 116 completed surveys - would love to reach 150 before the closing date.

Fri Jul 16 2010 14:13:09 #
Unregistered

Hi all,

For me, a hugely helpful part of reading your survey replies is the self-knowledge I have gained. I have no doubt that all those who read OUR BOOK will find it hugely beneficial too.

For the last 40 years I have insisted to every therapist I have seen that my OCD began precisely at the age of 22. In other words, one day I was well: the next day I had OCD. Many OCDers who have answered the survey have said the same. Yet, the experts agree that it generally starts in childhood and adolescence.

Having read the accounts of sufferers who vividly recall OCD symptoms in their childhood and teens, I am slowly realising that I had many of the symptoms that they had but they morphed into other symptoms. The importance of this for OCD sufferers is the need to diagnose OCD early, so that it does not damage our schooling, careers and dreams. But I also believe that it shows the need for therapists to help us deal with our pasts as well as the present. If they don’t, how can we truly move forward?

Thanks to all who have helped me to answer some of my unanswered questions. I do hope that many more of you will spare the time to help us in this quest for greater knowledge.

We have reached 120 from the two Forums, the OU site (thanks Fred) and my FB page. Please let’s make it 200.

Best wishes Anne and friends.

Tue Jul 20 2010 9:16:21 #
Tess
Member

For me too, becoming friends with Anne via this forum and, in turn, having contact with others who are contributing to OUR BOOK has vastly incresed my understanding of OCD and my own self knowledge. I also started to develop OCD at the age of about 22, as did my son.
Only last year a top psychiatrist at one of the country's most prestigious Mental Health Trusts gave evidence at my son's inquest which was repeated in the coroner's narrative verdict - and I quote - "he sought medical advice and saw a psychiatrist who diagnosed OCD. He however presented with some unusual symptoms, including feelings of anxiety, and aggressive thoughts. He presented as being distressed". What I have learned from this forum and from Anne's work is that these symptoms, far from being "unusual" are common to many OCD sufferers and I am shocked that top professionals are still giving out such misleading information. Not only that, my own evidence which I wanted to present at inquest as someone who had personally experienced what it is like to have OCD for 40 years was challenged as not acceptable by the Trust's barrister on the grounds that I do not have medical qualifications.
I believe that Anne's work is going to result in far greater understanding of OCD but it is really important that people do the questionnaire - not only to give as full a picture as possible of what OCD is all about but to give the book credibility in medical circles.
So, if you have OCD and haven't completed a questionnaire yet, please do one and help Anne to make OUR BOOK a very valuable tool in the understanding of OCD.

Tue Jul 20 2010 10:49:43 #
Unregistered

Thanks Tess,

Every time I post I get a few more replies and contributors.

So it is helpful to keep the topic fresh and exciting for the few remaining weeks until the survey is closed.

Tue Jul 20 2010 11:30:48 #
john999
Member

Hi all
I'v done a review of the Ocd workbook can't wait to see the finished article when its all put together.

Tue Jul 20 2010 12:38:47 #
Unregistered

Hi again

Thanks to all of you who have agreed to write articles and chapters for Our Book. We have almost covered everything necessary to make a really great book. All we really need now is:
An account from someone about his/her experience of running a self help group and the benefits you have derived;
A couple of accounts from sufferers who have found meds problematic in that the side effects have out weighed the benefits. I see from the survey that some of you have had this problem. (eg weight gain etc);
A few small accounts about the sports or artistic pursuits which have helped you gain or maintain control. Once again the survey shows that engaging in sporting or artisitic activities is very therapeutic for some sufferers;
More book reviews - especially from younger sufferers. They do not have to be full of long words or written in a special way. I would just like to hear whether or not the book was helpful to you and why. The particular value of this book is the different ways in which you all express yourselves. It is pure magic!!

The strict closing date is the end of September so I can start putting the book together.

Thanks so much
Anne and friends.

Thu Jul 22 2010 8:12:31 #
Unregistered

Hi all

Last update for this week.

We now have 124 completed surveys and are expecting some manual ones from self help groups all over Britain and Northern Ireland.

We would love to reach our 200 target by the end of September. If you have not found the time to complete the survey up to now, we would be so very grateful if you would put aside 25 minutes of your time to do this. If you run out of time, you can get back into the survey to complete it later. If you have difficulties with this, let me know and I can delete the entry and you can start again if you so wish.

We are collecting so much useful information from the survey. Self help books I have not heard of have been suggested. There is a wealth of coping tips. That has been the advantage of carrying out the survey in the US as well. It allows us to pool knowledge.

Have a wonderful weekend

Love
Anne and her UK and U.S. friends.

Sat Jul 24 2010 16:44:25 #
mama
Member

Hello all,
I just want to say that this forum is kicking the U.S. forum's booty in terms of response. Good job you! So if you could just slow it down a bit....just kidding its great. We need more surveys complete and I will be challenging the U.S. list to do some catching up. If you have not filled out a survey, please take the 25 minutes to complete one so we can reach that goal of 200 complete before September's end. We need all different types of OCD so that everyone gets a voice. So many of us silently struggle and no one ever knows a thing. We would love to hear details of your struggle...it makes for a much more honest and real book. Remember it is an anonymous survey, and thank you again for participating. You are amazing.
Andrea

Mon Jul 26 2010 20:50:35 #
Unregistered

It's taken me a while, but I've finally done the survey!!

Erm, don't have any beverages when you read my answers... some of 'em might make you laugh...

~~Me? sarcasic? Nnnnnooooooooo.......~~

Wed Aug 4 2010 21:49:22 #
Tess
Member

Hi Jess
Good on you and we need more like you to send in completed surveys. The optimum target of 200 means that Anne ideally needs another 70 to come in before the end of September. If you haven't done a survey yet, please, please give it a go. All the profits from the book will be going to OCD charities so by adding your own experiences you can help to make it a really comprehensive study and hopefully a bestseller. The survey is great personal therapy too because all the questions have been compiled by people with OCD who know what it feels like from the inside and not just as observers.

Thu Aug 5 2010 9:28:09 #
Unregistered

I did my survey online btw. Oh, and would you like me to write something for it? What do I do, just PM Anne?

Thu Aug 5 2010 21:13:10 #