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The Project

(56 posts) (17 voices)

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Unregistered

Hi all

As some of you already know, I have decided to write a book on OCD from the viewpoint of us sufferers. I wanted it to be a collaborative project, if possible, for many reasons. First, because I am a prefectionist, I may never get it finished. Second, I have no technical knowledge and would not know how to do pie charts etc. Third, without questionnaires I will not be able to get sufficient knowledge of the many problems OCD causes to do the book justice.

The objective is to increase awareness of our condition and to try to get more targeted treatment for sufferers. The target market is sufferers, their families and carers, and the professionals, if possible. I am hoping to work with an academic from the IoP to ensure that ethical guidleines are maintained as suggested by Dr David Veale. I need an acadmeic who specialises in qualatitive studies and I have already approached them.

I have not drawn up a detailed plan yet. But the general idea would be to write a piece of around 50,000 - 60,000 words (max) with charts and questionnaires at the back. Everybody contributing to the book would remain anonymous unless they state to the contrary. It would probably be divided into twelve chapters including a book review which I will write. The chapters will be thematic and include subjects such as: the different types of OCD we suffer; whether meds and or CBT have worked and ,if not, why not; the effect of OCD on our relationships; the effect of other illnesses on OCD; self harm and suicide resulting from uncontrolled OCD; the experiences of OCDers from other parts of the world and the type of treament available to them.

Some of these chapters will contain personal accounts. Some of you have already asked me to include such studies to increase awarenesss of the severity of our illness. Finally, I felt it was important to include a chapter talking about our aims and ambitions and whether or not we have achieved them despite our OCD. This will create a positive image of us OCDers and help to remove the stigma. As you will see I have already come out publicly on the Radio Cornwall forum - partly because I refuse to be ashamed of my illness anymore.

A percentage of the profits (if any) will be donated to OCD Action, to allow them to continue to operate this wonderful forum.

Any suggestions for the questionnaires would be most appreciated. I would also to love to hear from members living abroad to ascertain the difference in attitudes towards OCD as well as the difference in treatment. It would be great if this could have an internationla flavour. It would also sell better if it did. And this way we will be able to bring so many silent sufferers in from the cold. I was one of these for at least 20 years.

Thanks in advance for you help and many thanks to the many who have already offered their help.

Very best wishes to you all and sorry in advance for any typos.
Anne

Tue Feb 2 2010 11:30:08 #
Unregistered

As you know Anne you have 100% support from me. You are taking on a huge task and I am so proud of you. You have really thought it all through and it is inspirational. I hope many, many OCD sufferers will come forward and contribute the material Anne needs. Lets take OCD out of the Dark Ages and bring it well and truly into the 21st century and get rid of all this shame and embarrassment and stigma so that no-one in the future needs to hide away suffering and everyone can have hope that they will be able to beat their OCD.

Tue Feb 2 2010 13:32:00 #
nettlenoo
Member

you have my support too anne anything you wanna ask me feel free i really wanna get the issues out their as it varys so much from person too person. a book such as this will be great for sufferers and also for non sufferers familt members partners etc

Tue Feb 2 2010 13:55:42 #
Cuthbert ffoliott
Moderator

Beautiful plan, Anne, as I wrote you. I would be glad to contribute info on the scientific view on different symptom dimensions, for instance (there is quite an agreement on this); perhaps a couple of good brain scans would come in handy (to assert the neurological connection), and a colour image of different visual tracts in the brains of patients (which likely cause the 'staring' some of us do). Incidentally, I'm just working on the epidemiology of OCD (how many percent of people have it, what is 'early' and 'late onset OCD', and so on and so forth). Finally, a scheme of the major brain circuit involved in OCD would be very explanatory (in fact, I think anyone who's prepared to invest a little time could understand why certain areas in us are overactive, hence our unability to stop worrisome thoughts, and stop repetitive actions).

Tue Feb 2 2010 14:27:27 #
aishah
Member

Hi Anne, count me in as well. If I can help in any way just let me know.
Thankyou in advance for trying to get us heard.

Bridget
x

Tue Feb 2 2010 16:22:19 #
Liza22
Member

Hi Anne

I think this is a great idea. I would be willing to contribute a personal account if you would like and as I work as a proofreader I'd also be able to help with proofing if you need it.

Liza

Tue Feb 2 2010 18:58:59 #
Unregistered

Hi Liza

Yes to both. Thank you so very much.

anne
x

Tue Feb 2 2010 19:10:23 #
Unregistered

As I've said, this all sounds brilliant, and I look forward to being involved in any way I can.

Tue Feb 2 2010 22:15:01 #
Wombat140
Member

Just to clarify, the questionnaires are to be done before the book's written, it's the information gathered that will go in the back of the book. The questionnaire answers will be entirely anonymous. (I only know because Glad sent me a PM about it - I'm not involved in any of it, at least not at the moment).

Glad, I think it'd be easier for people to suggest questions for the questionnaire if they knew what kind of information you're interested in and what questions you'd already come up with. Just a thought.
Wombat140

Wed Feb 3 2010 18:03:04 #
Unregistered

Hi Wombat

I was just discussing this with Trudy today as she is doing the questionnaires with me. You are right. We need to get the contents of each chapter sorted first and then link the questionnaires to the chapters. I also need to have the help of an academic at the IoP so that I can have then examined by an ethics committee.

At the moment I envisage 12 chapters with a maximum of 5,000 words each. Some will deal with different types of OCD, others with the adverse effects of OCd on our lives, OCD in childhood, and the different treatments and whether they have worked or not.

It is not possible to cover every sympton of OCD and we will make that quite clear.
But there probably will be: a book review outlining professsionals views etc
one chapter on contamination OCD.
one chapter on hoarding.
one on rituals and ruminations.
one on fears of being a paedophile (as requested)
one on suicide and self harm resulting from OCD

one on the effects of OCD on relationships
one on CBT vs medication and their effectiveness
one on the way OCD has ruined job prospects, schooling etc
and if this has been overcome
at least one on the experience of people with OCD living
outside the UK
a technical chapter from cuthbert
one on OCD in childhood

I am going to start each chapter with a summary of questionnaires etc and then include case studies. So the questionaires will be based on the twelve separate chapters.

Best
Anne

Wed Feb 3 2010 18:38:28 #
Anon
Member

This is a terrific idea as i have already mentioned. I would be more than happy to contribute in any way possible. Thank you for such a wonderful opportunity
Anon

Thu Feb 4 2010 9:39:17 #
Unregistered

Thank you Anon - I am extremely excited about writing this. I have been so bored and unfulfilled since I finished my PhD. But this forum has simply changed my life for the better.

Incidentally, it was my husband who suggested I write a book on this. So I guess we need input from husbands/partners/Mums, dads and siblings in our chapter on OCD and relationships.

I hope it won't be too long before I get a reply from the Institute of Psychiatry. In the meantime I have box files ready for all your various articles etc. I am also reading, now my books have finally arrived. They have been stuck in a warehouse at Newton Abbot for 9 days.

Best

Anne

Thu Feb 4 2010 12:29:29 #
poppyfields
Member

Wow Anne what a hurculean task you've set yourself. I would not know where to begin but fully support what you are doing with the 'Project'. I've only just found the site, so if there is anything whatsoever i can offer to help you in any way at all, i will be only too glad to do it. I feel as you do about having hid my symptoms from all my family as much as i could all my life and now refuse to be ashamed of something i can't help and if i can speak out, then i do. I contributed to a Femail article on ocd in the Daily Mail last year and am about to let my story go out to Pick Me Up magazine. Very intimidated one minute and empowered the next!!!!!!!!!! Poppy

Sat Feb 6 2010 18:19:40 #
Unregistered

Hi

Thanks, i would really appreciate your hlep. Please let us know when your article comes out. I will PM you tomorrow after some sleep. Just got back from conference.

Sat Feb 6 2010 21:44:11 #
poppyfields
Member

I'm looking forward to your message and thank you for your time. Poppy

Sun Feb 7 2010 12:15:56 #
Unregistered

Hi all

After receiving a few personal accounts and suggestions for questionnaires I have realised that I have missed out a couple of very important subjects which must be adressed in the book. Sorry for this. But it takes time for things to really click.
The first is: The importance of forums, self health groups and shared tips for getting control of our illness. In fact I was thinking last night what a huge impact this forum has had on my thinking. As such, engaging with others with OCD may be as useful as CBT and will certainly work alongside it. We could include in this chapter naming your OCD voice, and learning to engage with it in a helpful way. We could also suggest hobbies we can engage in while we are ill and aims we should make for the future so we have a reason to get better.

The second is: The impact which trauma in childhood may have on ones OCD. I mention this because CBT does not address this. Although this may not be helpful to all sufferers, if assault, betrayal or rape has directly or indirectly resulted in OCD, discussing the trauma with a Counsellor must surely be part of the treatment.

I do think that addressing these issues will make the book more helpful to sufferers and their carers alike. So if you have any particular suggestions for the questionnaires regarding such issues please will you let me know by PM or email. Thanks in advance Anne.

ps I thing the objective of the book will maybe have to change to:
To help sufferers to find the best way of getting their OCD under control so that they can live fulfilling lives?
What do you think?
Anne

pps please excuse any spelling mistakes

Wed Feb 10 2010 11:47:47 #
Unregistered

That objective sounds perfect, I think it's what we'd all like to do.

Wed Feb 10 2010 17:56:47 #
Unregistered

Thanks Helz

It has taken me days of doubt to realize what the objective should really be.

After listening to the webinars about CCBT (CBT online) the book would be nearer that sort of approach than the standard treatment and the approach in books by professionals. CCBT talks from the point of view of sufferers but requires a carer who is neither hostile, a know-it-all who tries to be your therapist or a person who caves in. It can also be done at the sufferer's own pace so that s/he does not worry that it is going too fast and that s/he wont get enough benefit.

I think our book would compliment this. It will be good if someone using CCBT in September (when it becomes available on the NHS) will let us know how successful the teatment was so we can include this.

love
Anne

Wed Feb 10 2010 18:24:25 #
nettlenoo
Member

hi guys keep your ideas coming to anne i know its hard sometimes to express how we all feel but getting the knowledge out there will help us all have a better understanding of ocd and its effects. annes book will be a great success with help from you all any ideas or thoughts would be greatly recieved, pm glad with questionaire ideas or your own personal accounts of life with ocd. good luck anne
much love annette

Thu Feb 11 2010 11:48:50 #
Unregistered

Hi folks

I just wanted you to know that I joined the US International OCD foundation yesterday night and have had five offers of support for the project as well as a wealth of literature about OCD in the US.

One of their members who is participating (ocdmama) had joined the forum today and I hope you will make her feel welcome. She has already provided me with a personal account of her experience of OCD in the US. So this promises to be an exciting project.
Anne

Fri Feb 12 2010 16:11:40 #
mama
Member

Glad,
One thing I should tell you is that the doctors that are on that list are available to be emailed directly, and they will answer. They offer their advice and knowledge free of charge, and are considered leading experts in the field. Its quite an amazing resource! While their advice sometimes seems harsh or difficult to swallow, I trust their knowledge implicitly. Hope I can get to know some of you as well! I read some of your poetry thread and loved it! Thank you for sharing!
Andrea (ocdmama)

Fri Feb 12 2010 16:33:15 #
Rena32
Member

Hi Glad, I have come up with a question for the questionnarie.

How much time a day does someone with OCD waste on obsessions/compulsions?

I think this would be a good question, as I have often thought of the time, I could of spent doing something constructive, if I had not used it on obsessions/compulsions. I am sure others as well, have thought about all the wasted time that OCD causes. Maybe others on the forum could make an input about an estimated time they may waste a day because of OCD. I could roughly say that I have wasted several hours a day worrying/checking/reassurance seeking.

It would also be nice to know the percentage of us who may have cleaning compulsions versus checking compulsions and so forth. Hope this helps

Sat Feb 13 2010 5:03:35 #
Unregistered

Hi Rena

Thanks. I will include both these on the questionnaires. Of course it is the time that the OCD takes up which is so soul detroying. The comparison between subtypes is also a good one. According to a top professional in the US (in answer to ocdmama's question) no studies have been made to see the gender specific nature of contamination subtype. So that would be interesting to look at in a small way too.

Sat Feb 13 2010 8:36:20 #
Liza22
Member

Hi Anne

Not sure I can think of any more useful questions but here are a couple:

Does OCD affect your ability to work?

Do you keep OCD a secret from close friends or family?

What activities do you find useful as a distraction from OCD?

Liza x

Sun Feb 21 2010 19:43:16 #
Wombat140
Member

For subtypes, there's "Pure O" as well, with no physical compulsions. There's also an opposite form, with compulsions but no obsessions, rather like a tic. I call it "Pure C" - have a look at photoboy's thread.
Good questions, Liza.

Sun Feb 21 2010 19:59:58 #
mama
Member

How about
'Do you feel you are weak or worthless because you cant just 'snap out of it?'
or 'Do others treat you like you are weak or worthless?'
also
'Is anger an issue in your household...ie. do you or your loved ones have trouble controling anger as a result of your having OCD?'

Sun Feb 21 2010 21:49:45 #
Blueskies
Member

Hey Anne, thank you for your messages!!!

I was very interested to read your take on:

[i]The second is: The impact which trauma in childhood may have on ones OCD. I mention this because CBT does not address this. Although this may not be helpful to all sufferers, if assault, betrayal or rape has directly or indirectly resulted in OCD, discussing the trauma with a Counsellor must surely be part of the treatment.

If it would help others, I often write articles for pleasure and have posted them on other anxiety forums, so I would be happy to send you some of these as it covers the issues of domestic violence,both physical and emotional and childhood abuse, the recovery and the impact of control and how my OCD, manifested in contridictory beliefs leading to doubts and a inner conflict of trusting and safty issues.

You've taken on a worthy cause, and I hope it all goes well.

Love Pam

Fri Feb 26 2010 9:55:43 #
Unregistered

Hi Pam

Yes please. That would be absolutely brilliant. I feel sure this issue must be addressed.

I would also love to have your story of the type of OCD you had and how you have got your control back. Our readers will want to hear success stories - as this will help them to get better. I have been told this by many who have written to me.

I will send you another pm.
Thanks

Love

Anne

Fri Feb 26 2010 13:38:32 #
mama
Member

This is a good point Pam...I knew a gal who'd been kidnapped and raped, and had PTSD after and developed OCD as well...That really does need to be addressed in therapy...hmm.

Fri Feb 26 2010 17:33:11 #
Blueskies
Member

Hiya Anne I will email the attachments soon.

Mama, its interesting regarding PTSD. I went the neurological hospital here in london two weeks ago, to dicuss my spine problem. The consutltant asked me if I had any other problems. His colleague a clinical pyschologist sat in on my assesment for treatment and when she heard about my intrusive thoughts being of a violent nature, she asked me whether I had heard of PTSD. I had but paid no real attention to it until she mentioned it. The consultant and her both agreed that I was suffering from OCD AND PTSD.

Well I thought whatever next as I didn't have any awareness of the symptoms of PTSD, until I googled it and one of the symptoms was something called, depersonalisation, derealisation, disasociation. Well I was gob smacked as I had written an article about this in relation to my OCD!! many years ago!!! so my treatment begins in july so will take that article with me to share in the group.

I think this is why I have not had much success with CBT because there are other issues that we do agree needs to be dealt with in counselling.

Love Pam

Fri Feb 26 2010 22:56:24 #

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