What is the difference between this site and ocd-uk? can't the two sites combine to make a more active community of ocd sufferers?
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Thank you prettypumpkin . We also think that by working together, the two organisations could do more for the people that we are there to serve.
Joel - Director, OCD Action
Fri Dec 11 2009 8:27:11 # -
UnregisteredHi Joel
I fully agree, pooled resources would reach more people and also provide one single point of help and, I would have thought, less competition for funding. It seems silly to have two large organisations when one could do double the work. Then if it got too unwieldy it could split into more specific sections targeted to help different types of OCD and related disorders.
I don't even look at the OCD-UK website, there is more than enough material to keep my available time fully occupied on this one.Fri Dec 11 2009 11:05:34 # -
I was at the ocduk conference/agm, this year, and it was discussed about both
ocdaction and them joining together, but ocduk declined, which i think is
a shame.Hopefully, in the future, it may happen, but dont be put off using both forums
as the more knowledge you have about ocd, the better.
knowledge is a very powerful tool.ash007
Fri Dec 11 2009 14:56:28 # -
UnregisteredIf the two forums ever join forces, I am off! I found so many of my messages on OCD UK were edited or deleted. I am not one for offensive language and found this very annoying. My views, that CBT helps the majority, but does not work for all, seemed to be treated as blasphemy! If you are determined and want to beat OCD badly enough, you can. That’s the OCD UK message!
Others were excluded from OCD UK for making statements which were frowned upon.
This forum is run in a very relaxed style and Caps does a wonderful job, only occasionally removing a message that oversteps the mark.
Tricia.
P.S. If this message were posted on OCD UK, it would be removed within minutes.
Fri Dec 11 2009 15:18:31 # -
Hi Tricia,
I agree with you that the forum is run in a very relaxed style and that is what makes it so easy to talk. I wouldn't want to be on a site where if I didn't agree with their views my post would be edited. Fair enough to do so when somebody oversteps the mark. But apart from that we are all individuals and entitled to our opinions.
Keep up the good work OCD action this is the only place that I feel safe enough to express myself and have received a tremendous amount of support from other forum users.
Thank you
TruddlesFri Dec 11 2009 16:53:45 # -
Ive found both forums very useful, and thanks to the knowledge i gained,
i consider myself 95% better.shame, that posts do get deleted, if you feel that cbt hasnt worked for
you, and you feel other methods may work, but i suppose as cbt is the best
way in helping you overcome ocd, for the majority, that is.Fri Dec 11 2009 18:25:56 # -
UnregisteredHi all
I don't think it is a question of whether or not CBT is effective in treating OCD. It is just that for some of us who have really severe OCD the fear can be too great to face. I, like other members here, am an old-timer ie I have had OCD for almost 40 years. I had many goes at CBT before I went to the Bethlem. What with being the main wage earner and having to do the majority of the housework I did not have sufficient time to do the homework let alone to risk facing my fears and maybe lose my job. The anger and fear that facing my fears was causing me was also undermining my marriage.
By the time I got to the Bethlem I was seriously ill as the OCD was affecting me 24 hours a day and 7 days a week. I also had chronic depression which the drugs failed to even touch. I got quite a bit of control at the Bethlem and then left my job on early retirement (their advice) and worked with a homeopath for a year before getting around 80 percent control - enough to go to Uni and get my three degrees.
The treatment at the Bethlem was tough and I got really afraid - 100% fear which took days to go down. I kept my control for around eleven years before having two really bad relapses. This is the second relapse and I am working for hours a day doing my homework in a bid to get to 95%. So I can understand why some of my friends on the site feel that there are better and less stressful ways of coping with their illness. ie For some members medication works far better than it does on me.
Best wishes to you all and thanks again for helping me during my frightening treatment
Love
GladFri Dec 11 2009 19:05:46 # -
totally agree glad, as i have found that those who have ocd for long periods
(15 years plus) are much harder to treat, as the ocd has become so deeply ingrained.thankfully, for those who are diagnosed at an earlier stage, it does appear,
that with a correct therapist, there ocd is more likley to respond to cbt.Fri Dec 11 2009 19:28:20 # -
I don't think it is a question of whether or not CBT is effective in treating OCD. It is just that for some of us who have really severe OCD the fear can be too great to face.
There can be other reasons, too. I don't actually have any fears with my compulsions, I just feel I have to do them. A bit like Tourette's syndrome, except that I only have to do them in particular circumstances. I do my best not to do them, but if they're too strong then I can't help it at all. So CBT can't do it - at least to start with.As for OCD-UK merging with OCDAction, strangely enough there's a rather heated thread going on there at the moment about the very problems some of you mentioned. Somebody accused them of being a "CBT cult"! Of course, as far as campaigning etc. goes, it would be good if the two groups merged... but the forums, NO! They both have their own advantages, which would be lost if they merged. Perhaps have one organization, but two forums???
Wombat140Fri Dec 11 2009 19:52:58 # -
UnregisteredHi Wombat140
We have not met before. What sort of treatment are you getting and does it work for you?
As regards merging the two forums if the other site is strongly pro-CBT it would not be suitable for people who have tried it without success. As these are some of the people who most need support this would be disastrous. This site is particularly good because members can freely share their experiences without fear that their messages will be censored (unless they break the rules). Old-timers and new sufferers can share experiences and coping strategies. I have learned a lot of new strategies since joining and it has been most helpful in my slow recovery. One organization but two forums sounds a much better option.
Best
GladFri Dec 11 2009 21:26:36 # -
true to a degree glad, but that is dependant on the ability of the therapist.
sometimes cbt does fail, but it depends on that therapist, and there knowledge of ocd, and its also important to remember, we are the pros, of our condition,
they are there to make us better.and of course, its important to deal with any other issues, that may run alongside the ocd, as this could be hindering any progress with the recovery
Its also, important, that when we are doing cbt, to fill the gaps that have
been left, from the compulsions we used to do.........there are lots of
hours to fill in.Fri Dec 11 2009 21:55:35 # -
UnregisteredYes I agree.
There are some good therapists out there. I pay for mine out of my savings and have asked the NHS if they will part-fund the treatment. I have not had an answer yet. She is particularly good because she trained at the Maudsley but also does treatment that you probably would not get on the NHS. ie She has showed me how to use visualization and tapping to change an object from contaminated to clean. She is also more prepared to do exposure with me (the first time)than some of my previous therapists. Finally I can ring her if I am totally unable to cope which is a real safety line.
Yes you are also right that it is important to fill in the gaps left. I long to get back to using my PhD when I am well enough to concentrate and I intend to try and start again in January. At the moment my attention span is too low to start. It is too cold to do gardening and I have run out of good books to read. Accordingly I am incredibly bored - and this is how the compulsions sneak back in.
What do you do to fill in those long gaps?
Best
GladFri Dec 11 2009 22:16:54 # -
thats a good question, gaps, i suppose reading helps, exercise, a new hobby..
and of course, exposure work, is, in my opnion, the big key, into getting better.
i found, using the four steps, very useful (dr jeffrey scwharz, brainlock)
....good luck with it all, you can and hopefully will get better.
ash007
Fri Dec 11 2009 22:27:56 # -
Someone said [i][i]"As for OCD-UK merging with OCDAction, strangely enough there's a rather heated thread going on there at the moment"[i] If there is I can't find it on the OCD_UK board. That is probably because it has been pulled by OCD-UK - and that is typical of them. Anything they even slightly don't like or agree with they pull and often ban the member who posted it. I really don't know what their problem is - they have an attitude problem that is doing nobody any good.
As for the 2 organisations merging, that has to be a good thing as it will make a single more powerful voice. At the moment OCD Action is making all the running where it matters while OCD-Uk only do comfort things like local conferences. Both are needed so why not merge? OCD Action have said that they want to work together and From what I can see OCD-uk are the problem as they want to hide in their little shell and protect their little empire. So the challenge is to oCD-UK get real and work for people with OCD and stop working against sensible progressive suggestions.
Fri Dec 11 2009 23:11:23 # -
UnregisteredHello everyone
I am finding this topic very interesting as one who has not used the OCD-UK site and I now feel very reluctant to do so. I find this forum so comfortable to use and in two weeks I feel I have made real friends who understand me, don't judge my ways of dealing with my OCD and who I believe may have been helped by things I have written. But from what others are saying it seems as though OCD-UK would probably edit me out. I think this is a very unkind thing to do to people who are suffering acute emotional distress and if the OCD has not responded to CBT then my view is that the treatment is not working rather than the patient is not trying hard enough.
I have had OCD for over 40 years, long before CBT was introduced and I have never been offered it but I have developed ways of managing my OCD so that my life is no longer totally dictated by my disorder. I attribute this to SSRI medication which I have taken since it's introduction in 1992. I sense an attitude amongst the "professionals" that unless you constantly challenge your OCD it will become more and more ingrained and disabling. This is not my experience, I have managed, without formal therapy, to eliminate all checking problems by constantly challenging the need to check but I have been unable to achieve the same result with contamination issues. However, by adjusting my lifestyle to accommodate the contamination requirements I can live my life without anxiety which gives me sufficient emotional reserves to be able to deal with most unexpected stresses which are part of everyone's life. I am not bored and believe it or not, contrary to medical opinion, the contamination issues are very very slowly becoming less of a problem as time goes by.
Am I a total failure and is my input damaging? Or could it possibly be that CBT is not a panacea for all types of OCD and is just the latest, more refined but still clumsy tool in the medical kit bag. I personally suspect the latter and whilst it is the treatment of choice and obviously far better than anything which was available when I was first diagnosed I believe that one day in the future it will be relegated to history to sit alongside Freud.Sat Dec 12 2009 10:50:11 # -
Hi Joyce,
There are many words of wisdom being spoken on this site and I have learnt more from the forum members than from any of the so called professionals.
This forum is proving the theory that OCD goes hand in hand with an above average IQ. Perhaps we should be telling the professionals what we need.
I no longer feel alone as I've made many good friends on the site.
More importantly I no longer feel that my OCD is as weird as I thought, as I have discovered that a lot of my obsessions and compulsions are by no means unique to me.
Every time that I read of some one with the same or similar problems to me my heart goes out to them, but at the same time I realise that I'm not the only one.
I agree with you that CBT isn't necessarily the answer for everyone, especially if there are other issues or medical conditions involved.
Take care
TruddlesSat Dec 12 2009 12:48:30 # -
UnregisteredApologies if anyone feels I am having an unfair ‘pop’ at another site. I am merely doing so because I cherish the freedom of speech allowed on this one, and was quite alarmed to read this thread, realizing that things could change.
One question, if the two did merge. What will become of the very pleasant members on this forum who have been banned from OCD UK? I jumped before I was pushed, but doubt I’d be allowed to return. Not that I would want to! Every time I wrote, I did so knowing my messages were likely to be removed. I would sometimes spend an hour trying to help on another person’s thread, as others were doing, and the messages were not controversial at all. I would find the whole thread had disappeared the following day, because the administrator disagreed with someone‘s innocuous remark. It didn’t seem worth putting the effort in.
I phoned OCD Action’s office, a few years ago, because I noticed members of the board were having difficulty finding OCD books listed on the site. I realized the layout of certain things was much more accessible on OCD UK. I gingerly mentioned this and was told in no uncertain terms that OCD Action was not going to emulate OCD UK in any way, and was given reasons, which I won‘t repeat. Maybe views, and members of staff, have changed.
Joyce, my views are the same as yours. I am not a negative person by nature and I know you are not, either. I did not spout doom and gloom telling others they would be wasting their time with CBT. I always think anything’s worth trying, and CBT has been the best therapy for OCD. What I realized was happening, which the administrator and moderators on OCD UK failed to see, was that to say ‘if you want to be well badly enough you can overcome your OCD’ was causing depression, guilt and even total devastation for those who had tried as hard as they could but had not responded to treatment. For a while I was suicidal. Only Professor Frederick Toates came to my rescue and made me realize that some of us can give 100% and not respond. I don’t believe this to be negative attitude, it‘s an honest, realistic one. To lead people to believe this illness can be beaten with strength of character, is like telling those with cancer that with enough determination they will beat their illness. A positive attitude and strength of character help, naturally, in any situation, but sadly they are not always enough.
Professor Salkovskis I have great admiration for, but he, too, in his documentaries made a cure seem simple and certainly down to one’s willpower (and good therapy). In private he has admitted to me that there is no therapy that will work for everyone. His motives, like those of OCD UK, are honourable, but I feel misguided. Yes, by telling us all we can beat this if we try hard enough, gives many hope. But, what about those who are left in despair? What about those for whom therapy failed to help (not they failed therapy!) And what about family members, already struggling to comprehend this illness who were given the ammunition to say ‘look, the professor, who is an expert, has indicated even severe OCD can be beaten in two weeks, if the effort is put in, so just try harder’. I actually know people whose families were beginning to have a little understanding, who, after watching the documentary, lost all patience with loved-ones, who were left isolated in despair.
At the Maudsley, I was assessed by one of the psychologists in the professor’s documentary. I asked if I could receive the same two-week intense therapy as those on the programme. Apparently I am too severe. And yet we were told that the three chosen were three of the most extreme in the country!
Joyce, I have already seen psychologists’ articles which indicate that CBT is not the panacea it had been claimed. You are right, one day it will be consigned to the history books, like Freud. And, in many cases it’s as far-fetched! I was told I would need to rub my hands in dog faeces and then possibly eat a sandwich with those hands, without washing, IF my fear had not risen adequately by just touching it. Strangely enough although it’s my contamination fear, I could comply with their request easier than most without OCD, as long as no trace of it enters my home!!
I have been thinking of you a great deal, Joyce. I still miss my dogs and they died many years ago.
We are so glad you joined us, and in those two weeks you have become a very special friend. I was not altogether happy with the new site (my OCD, I hate change) but with it came some very special people, and I would not want to go back now!
Tricia x
Sat Dec 12 2009 12:59:15 # -
UnregisteredDear Truddles, don't ever forget that you are not alone! You have also brightened up this forum and become a good friend. I know you are suffering so badly, but you have not lost your sense of humour and we so appreciate having you here.
Tricia x
Sat Dec 12 2009 13:07:11 # -
UnregisteredDear Anne, so glad you are back, we missed you!
Tricia x
Sat Dec 12 2009 13:44:07 # -
Hi Tricia,
So glad that you didn't hurt yourself. I too have a lot of things that are in bags and I will now not panic so much just remember that they could save my life
Seriously they can be a nuisance but when you're frightened to go through them what else can you do other than keep them
Thank you for your kind words - I feel that at the moment we are very fortunate with the friends that are using the forum at the moment.
Caps also makes me laugh even when I'm really low.
Let's keep up the humour after all laughter is supposed to be the best medicine.
Truddles.Sat Dec 12 2009 14:00:02 # -
thankfully, cbt does help the majority, and that is why it is widely
used, because of its success rate.for those, who sadly dont respond to cbt, it would be unfair to suggest
it would be banished into history, because without it, i wouldnt be
in the position i am in today.everytime we choose safety, we reinforce the irrational fears
Sat Dec 12 2009 15:31:09 # -
UnregisteredHi ash
Not sure that is completely true. I choose safety over boldness lots of times and it is not always the wrong choice. Doing exposure therapy on a really bad day like yesterday would have been counterproductive for me. I felt anxious all day and decided to give myself a day off. Today, after my healing and hair appointments, I made up for yesterday twentyfold by walking on all the nastiest drains in town with my new pixie boots. If I still felt unsure of them I stamped on them agian for good measure.
Another thing I notice is to pick the right time to fight your fears. For instance after experiencing cancer phobia (part of my OCD) for over ten years I hugged a sufferer whom I had just met and was instantly cured. CBT had failed - but in the end love and compassion conquered all.
Best
GladA
Sat Dec 12 2009 17:00:39 # -
UnregisteredHi Joyce
My psychiatrist (a believer in Freud) used to call me his little Lady Macbeth because of my hand washing. He had no understanding of my OCD at all. I certainly do not have any dirty secrets which I need to wash off my hands. The last time I saw him he asked my advice for treating another patient with OCD
It is a good job Freud has been relegated to history.
As for CBT it is only one tool - alongside homeopathy, healing, medication, visualization etc and certainly not a cure-all. As for immersion therapy are they joking! They wanted me to go down the Victorian Sewers while I was at the Bethlem. I would have ended up as barmy as the Penguin in the Batman film.
Love
AnnexxSat Dec 12 2009 17:10:59 # -
UnregisteredDear Tricia
I am glad to be back
Love
AnnexxSat Dec 12 2009 17:12:05 # -
UnregisteredDear Truddles
Keep on fightin
Love
AnnexxSat Dec 12 2009 17:12:42 # -
UnregisteredHi Truddles
These typing errors keep on coming. Well done on the bags.
Love
GladSat Dec 12 2009 17:23:10 # -
Hi all, I have changed the topic title to CBT as that seems to be the main thing that we are talking about. We can open up a new topic called something like "How we can best help people with OCD" and use that to talk about what OCD Action can do to help more people.
Thank you
JoelSat Dec 12 2009 22:05:00 #
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