Note to all: don’t give up! Stay positive and determined! It’ll always work out

[Kcbell92]

I want to be a voice to all sufferers of ocd. I had it very bad at one point where I felt like giving up and just always failing in life. I had worries about one friend not dealing with me anymore for stupid reasons because another one did and I had worries of my car sounds and movements creating a situation where my car is destroyed and ant pimple on my body making me die soon, but I’ve learned in reality it’s all just illogical untrue unrealistic worries and acting on my compulsions and seeking re assurance is just going to worsen the issue. I know I have to just give my friend time and if he was angry and didn’t want to deal with me he would just tell me right away. And if my car makes noises and still drives it’s fine and if it’s a pimple just let it be and if it’s of any concern have a doctor check it it should be fine. Just please know everyone that everything will be fine. Your worries are just worries and most aren’t even going to happen at all, especially in the way you feel, it’s how you perceive it and how you react on it which makes it worse when you begin ruminating. Always trust the words of @PolarBear and @snowbear they’ll help you like they helped me. Stay strong 

[Summer9173]

I needed to hear this, thank you so much currently feel so sick with nerves I hope this week goes okay for me too 

[Kcbell92]

8 hours ago, Summer9173 said:

I needed to hear this, thank you so much currently feel so sick with nerves I hope this week goes okay for me too 

reach out to me too if  you need. I used to suffer greatly from nerves and stress and i constantly used to post it here, not even seeing the reality of why i was suffering from nerves and extreme sensitivity from OCD, I was giving into my compulsions and acting on them.

[malina]

Thanks for sharing @Kcbell92...having a bit of a tough day and really needed to hear this

[Kcbell92]

6 hours ago, malina said:

Thanks for sharing @Kcbell92...having a bit of a tough day and really needed to hear this

Your welcome, hope your day was still good! Mine was for sure, like every day now!

[bendylouise]

Thanks Kcbell for your encouragement - you've done well, keep it up.

[Veryblue]

after 27 years in hell  I don’t share your positivity

[WorriedToHell]

14 minutes ago, Veryblue said:

after 27 years in hell  I don’t share your positivity

It's hell

I am also getting more and more suspicious towards CBT, it seems to me like you always get the advice to move on. SOmetimes I just want to scream, I was murdered, tell me this is a REAL problem. Just as an example...

Edited September 30, 2022 by WorriedToHell

[DRS1]

13 minutes ago, WorriedToHell said:

It's hell

I am also getting more and more suspicious towards CBT, it seems to me like you always get the advice to move on. SOmetimes I just want to scream, I was murdered, tell me this is a REAL problem. Just as an example...

I wouldn't be suspicious of CBT with ERP at all. There are of course therapies that are detrimental to those with OCD mainly talking therapy as trying to figure out "the reason behind your thoughts" when there is no reason keeps you in a ruminative loop. Besides that I would say some people don't find ERP the right thing for them. For some people maybe its ACT they find more useful or DBT etc. CBT with ERP definitely works but it might not work for everyone. As its been stated on the forum before, for ERP to work you need to be able to gradually build up the exposures. You shouldn't just target the most terrifying ones first that you will find hardest to stop doing the compulsions to. You also need to be ready to take the risk during the exposure that the thing you fear could happen for the chance to see that OCD is wrong.

 

I don't know if I would say its about moving on more than its about not getting caught up in what OCD wants you to do. It's certainly not about ignoring it but more realising it can be there whilst you want to do other things. For most of us on the forum, I imagine the majority in recovery have had some good experience with therapy (and hopefully CBT with ERP). There are certainly issues with how therapy access is and especially effective therapy in the UK and also elsewhere (US comes as an example as not all insurance companies allow for people to get treatment from people who know what OCD is and how to treat it). 

 

I don't speak for everyone, but for me CBT with ERP helped a lot. It completely changed my life. I used to spend 6 hours a day at least doing compulsions. Now I'm lucky if I spend 15 mins a day. It can and does get better, it just might take a while. I can experience intrusive harm and sexual thoughts, images and sensations but it doesn't mean anything anymore. Would I rather not experience them? Sure, but then I wouldn't be human. So much of getting better is realising that trying to control the thoughts, argue with them, prevent the content (a situation for example) from actually happening, ruminating over whether or not you did harm someone violently or sexually in the past but don't actually know for sure, etc. doesn't help, these are the things keeping it going. I can sit and laugh at intrusive thoughts or images and think its hilarious that OCD tries to get me back into the compulsions. ERP has become a game for me and is actually enjoyable to not react to OCD's urgency for compulsions and think of ways to exaggerate the trigger (situation, or thought/image) to be as bad as I can make it just to show OCD I don't care anymore. 

 

It's not easy to cut out compulsions. I won't lie to you, it can be brutal. Learning that you don't have to ruminate and you have a choice is ground-breaking when it happens.

 

You could be living with OCD for 1 day, a week, a month, a year, 27 years, its brutal nonetheless. However, seeking adequate treatment and being able to commit to therapy should help no matter how long you've had it for. I feel very passionate about this after going through what I have went through at its worst, I would never want someone else to have to go through it thinking it doesn't get better cause it really does. I had moments where I thought I was stuck like that forever, questioning how I would ever get my own self back, what my values were and even whether or not I was going to be locked in a mental hospital forever (which by the way is the most ludicrous thing to think especially if you have OCD but that's OCD thinking for you). It can always improve, you aren't stuck like this.

 

[snowbear]

2 hours ago, WorriedToHell said:

It's hell

I am also getting more and more suspicious towards CBT, it seems to me like you always get the advice to move on. SOmetimes I just want to scream, I was murdered, tell me this is a REAL problem.

 

Except you weren't murdered, or given a death sentence, or anything as dramatic as your catastrophic thinking is telling you.

A good therapist would tell you that this isn't a real problem. That it's all in your head and it's just the way you're thinking about it that is making it seem like a problem.

It will remain hell for as long as you keep thinking about this in the same way.

When you learn how to change the way you think about it the hell will end.

[Veryblue]

2 hours ago, snowbear said:

 

Except you weren't murdered, or given a death sentence, or anything as dramatic as your catastrophic thinking is telling you.

A good therapist would tell you that this isn't a real problem. That it's all in your head and it's just the way you're thinking about it that is making it seem like a problem.

It will remain hell for as long as you keep thinking about this in the same way.

When you learn how to change the way you think about it the hell will end.

What about the 50 percent of OCD sufferers who don’t benefit from ERP according to some research?

[DRS1]

18 minutes ago, Veryblue said:

What about the 50 percent of OCD sufferers who don’t benefit from ERP according to some research?

I'd counter that with studies saying that its between 65%-80% effective. Again the important part regardless of any type of therapy when it comes to OCD is, the key to OCD getting better is changing how you react to it. If you keep trying to get rid of the thoughts or not have them then your always going to have a problem every time they crop up. Stop those compulsions and let the thoughts be thoughts, the images be images and the sensations be sensations and OCD will get better.

 

Also just to add too, not everyone who gets offered therapy is necessarily ready at that point to do therapy. Whether or not you think ERP or any therapy is effective, everyone technically does it subconsciously when they drive they take the risk that their could be a car crash and they might die but they take the risk of driving anyway as its convenient. They don't try to avoid driving ever again just because of the risk. 

 

A key part in your 50% statistic, its super important to look at that context. "Despite strong evidence supporting the use of ERP in the treatment of OCD, about 50% of patients do not show significant improvement and 25% to 30% drop out of treatment prematurely. Research has indicated differences in patient OCD symptomology as a predictor of treatment outcome. Across both adult and child samples, lower baseline symptom severity predicts greater symptom improvement following ERP. Additionally, greater insight predicts better ERP treatment response. In regards to particular symptoms, some research suggests poorer response to ERP for individuals whose OCD is characterized by unacceptable or taboo thoughts. Moreover, individuals with OCD that primarily perform compulsions in response to “not just right” sensations/incompleteness, rather than to avoid a feared outcome, may benefit less from ERP. Foa and colleagues found that compared to those who articulated feared consequences, patients with OCD that did not showed less symptom reduction post-treatment."

 

So yes it may be lower for certain studies but why in particular seems to mainly point at a lack of insight in the condition and how it works. Taboo thoughts also is an important factor as there is additional stigma attached to people being able to disclose those even to a trained psychologist who understands OCD in the fear they will think they are those things. Another point here is there are studies to suggest that some people who had a combination of SSRI + ERP when they came off the SSRI went back into the cycle of OCD and that can be down to the SSRI making the symptoms better but not really taking to the therapy and learning how to deal with it.

 

Again I'm not trying to say OCD treatment is a 1 track option. There are so many emerging therapies as well as combinations of existing ones that help people. Gaining insight into the condition is the most important thing though as with that you have the ground to stand on to recover.

[bluegas]

Erp or cbt has never helped me and god I’ve tried I know people mean well ! But can make you feel so much worse when you hear people saying how great it is ! And then make you feel bad like you haven’t tried hard enough! Maybe it doesn’t work for everyone

 

[snowbear]

1 hour ago, Veryblue said:

What about the 50 percent of OCD sufferers who don’t benefit from ERP according to some research?

Lots of possible reasons. I'll list a few of the most common/ most likely:

- they were doing ERP exercises but doing neutralising compulsions after (which undoes the ERP)

- they focused on ERP without doing any cognitive therapy (so their thinking process didn't change and the next 'trigger' sent them back to square one)

- they didn't do the ERP (made the hierarchy so easy for themselves they spent therapy sessions only ever tackle issues that aren't that big a deal for them, leaving the 'real' problem untouched)

- the therapist didn't understand OCD well and gave bad advice/ didn't address the problem in the right way (sadly it happens sometimes)

- they knew what to do but couldn't manage to push themselves out of their comfort zone and fully engage with the ERP

These are just some of the most common reasons why therapy / ERP might not work. It's not that ERP doesn't work.

ERP will always work if done correctly - fully committed to it, genuinely facing the fear and working through it.

When research studies say 'ERP didn't work in 50% of their study participants', they don't mean ERP couldn't work for those people, or that given another chance to commit fully and more practise at not doing neutralising compulsions that it wouldn't work.

Be careful not to take a statistic out of context and use it as an excuse why you didn't find ERP/ therapy helpful. Look for the real reasons and address them so that next time around you're one of the 50% (or typically more) who do find ERP works.

[WorriedToHell]

Many of the people in groups I have encounter think that statement is very offensive. And rigid. I don't mind it.

I didn't mean that I am murdered I just get the feeling, we are said to just accept, but what if something have happened, many things have happened to me in my life. Sure there is no point in thinking about them but I guess you could...

I just feel crushed.

[Veryblue]

2 hours ago, bluegas said:

Erp or cbt has never helped me and god I’ve tried I know people mean well ! But can make you feel so much worse when you hear people saying how great it is ! And then make you feel bad like you haven’t tried hard enough! Maybe it doesn’t work for everyone

 

It doesn’t. No therapy is effective for 100 per cent of sufferers regardless of the condition. ERP has been put on a pedestal and gives false hope to many OCD sufferers.

[PolarBear]

7 minutes ago, Veryblue said:

It doesn’t. No therapy is effective for 100 per cent of sufferers regardless of the condition. ERP has been put on a pedestal and gives false hope to many OCD sufferers.

There are two things you need to do to recover. Change the way you think about your obsessions and change the way you behave as a result of having obsessions. Even simpler, change the way you react to obsessions. 

This organization emphasizes CBT for OCD, not just ERP. ERP is great and wonderful but it does not focus on getting sufferers to change their thinking, which is what Cognitive Therapy does... the C in CBT.

Behavioral Therapy (the B in CBT) is about changing your behavior. Primarily, it is about reducing and stopping compulsions. You can learn to reduce and delay compulsions over time. You can also do ERP, which is a specific Therapy to give you practice in not doing compulsions.

CBT works, under certain conditions. The more severe the case of OCD, the more challenging CBT becomes. 

Snowbear has listed some of the common reasons why CBT may not work. They boil down to a therapist not teaching a sufferer properly or the sufferer not fully doing what needs to be done.

[Veryblue]

6 hours ago, PolarBear said:

There are two things you need to do to recover. Change the way you think about your obsessions and change the way you behave as a result of having obsessions. Even simpler, change the way you react to obsessions. 

This organization emphasizes CBT for OCD, not just ERP. ERP is great and wonderful but it does not focus on getting sufferers to change their thinking, which is what Cognitive Therapy does... the C in CBT.

Behavioral Therapy (the B in CBT) is about changing your behavior. Primarily, it is about reducing and stopping compulsions. You can learn to reduce and delay compulsions over time. You can also do ERP, which is a specific Therapy to give you practice in not doing compulsions.

CBT works, under certain conditions. The more severe the case of OCD, the more challenging CBT becomes. 

Snowbear has listed some of the common reasons why CBT may not work. They boil down to a therapist not teaching a sufferer properly or the sufferer not fully doing what needs to be done.

Yes I know about CBT and it too cannot be claimed to have a 100 per cent success rate and often “failure” is just the way it is (not meant in a callous way). 

[WorriedToHell]

4 hours ago, Veryblue said:

Yes I know about CBT and it too cannot be claimed to have a 100 per cent success rate and often “failure” is just the way it is (not meant in a callous way). 

Some people would call it a fundamentalistic statement.

[bluegas]

Unfortunately the lucky ones that it has worked for will continue to bang the drum of how great it is !! Whilst pushing the likes of us further out in the cold! It’s great that it’s effective for some  but to say the ones it doesn’t work for are not doing it right is wrong!  Ocd treatments are still very poor and have a long way to go I imagine in 30 40 years people will be gob smacked  that we were told it could be  managed  by erp /cbt hopefully by then some revolutionary new drug will be available !  

[northpaul]

14 hours ago, DRS1 said:

Again I'm not trying to say OCD treatment is a 1 track option.

This statement/viewpoint is something that I would agree with - treatments for OCD do not rely on CBT alone.  CBT is a good treatment in helping to stop the compulsions.

However my recovery in my latest episode has not been entirely down to the CBT.  Neither has it been down to just stopping the compulsions as some would advocate.

Additional factors in my recovery have included medication, distraction therapy, mindfulness and a change in the situation that caused my latest depressive episode of which OCD has been the major symptom.

For those that dont get much benefit fron CBT there are a variety of options.

Like the thread title says: 

Note to all: don’t give up! Stay positive and determined! It’ll always work out

[PolarBear]

I don't want to come across that I advocate CBT as the only thing you need. It is the core in the toolbox that we have. Cognitive Therapy and Behavioral Therapy are not rigid. There are a wide variety of methods within each that can e taught. Even ERP, the devil's therapy for some, can be tailored for each sufferer.

Then there are adjunct methods that can be utilized. CBT on its own doesn't always address the real problem of anxiety that comes with OCD. Most know they have to stop compulsions so why don't they do it? Because they can't handle the ensuing anxiety that always follows. Learning to deal with anxiety in a healthy way can really help in recovery.

 

[Veryblue]

5 hours ago, bluegas said:

Unfortunately the lucky ones that it has worked for will continue to bang the drum of how great it is !! Whilst pushing the likes of us further out in the cold! It’s great that it’s effective for some  but to say the ones it doesn’t work for are not doing it right is wrong!  Ocd treatments are still very poor and have a long way to go I imagine in 30 40 years people will be gob smacked  that we were told it could be  managed  by erp /cbt hopefully by then some revolutionary new drug will be available !  

Exactly 

[DRS1]

41 minutes ago, Veryblue said:

Exactly 

Rather than have the clear difference in argument of ERP/CBT and whether or not it is effective or not. I'd want to know why for anyone that feels like the therapy they received (whether that was CBT/ERP or something else) didn't work for them? It's easy for those of us who have had success with CBT/ERP to say it works and easy for those who didn't have success with to say it didn't work but talking about why it worked for people and why it didn't work for people I think would genuinely be really insightful for both sides to understand those particular issues better. Whether or not its possible to do that in this post on the forum or to have another post created or whether or not it's helpful at all to have that discussion I'm not sure but its just something I've been thinking about since yesterday.

[PolarBear]

6 hours ago, bluegas said:

Unfortunately the lucky ones that it has worked for will continue to bang the drum of how great it is !! Whilst pushing the likes of us further out in the cold! It’s great that it’s effective for some  but to say the ones it doesn’t work for are not doing it right is wrong!  Ocd treatments are still very poor and have a long way to go I imagine in 30 40 years people will be gob smacked  that we were told it could be  managed  by erp /cbt hopefully by then some revolutionary new drug will be available !  

We bang the drum because, basically, that's all there is. There are other things you can do, like take meds, mindfulness, that can help, but CBT is the core treatment for OCD.