Why Is There Such a Stigma About Cognitive Behavioural Therapy?

[jay777]

I've got screaming loud tinnitus all over my brain and in both ears, I've got chronic pain that is absolutely excruciating that I'm on tramadol and co

Wow Ed, now you compare.

 

[Ed209]

Wow Ed, now you compare.

Mate, I've always had it severe. I didn't quit my music career on a whim, that shit hit me hard.

 

[fishbone]

I've got screaming loud tinnitus all over my brain and in both ears, I've got chronic pain that is absolutely excruciating that I'm on tramadol and co-codamol for, I've potentially got glaucoma, I have horrible scar tissue all across my chest which limits my movements quite significantly, and I'm ejaculating blood.

I still don't see why CBT has such a stigma. I think it's used as mainly as a scapegoat so people can air their frustrations. A lot of the arguments I've seen have nothing to do with CBT, in my opinion, but it's clear I'm in the minority.

Ed I think you and I are related somehow

I don't want to list my sorrows vs others in life. Even If my sorrows are crazy (which they are) I still see lots of potential in life. All of us are suffering and it's a hard life to live. We can band together and unite on such a forum and show appreciation for efforts we are making to improve our lives, while living with such a tragic ordeal. The only thing I ever ask is to not assume some may have it easy, just because they open up their heart and care for all these people on a forum

I take all people's consideration to heart and just try to help, like you do. That's all we can do buddy, we can give and just try to help

 

[jay777]

Mate, I've always had it severe.

15 hours of sleep a week for over 2 years, is that severe?

 

[Ed209]

@brownbear, there's something I need to ask you that's of the utmost importance: is your avatar derived from Peppa Pig?

I say this because every time I'm forced to watch that damn show Dr Brown Bear reminds me of you.

 

[Ed209]

15 hours of sleep a week for over 2 years, is that severe?

That's tough going, Jay, as I said in past, I feel for you man. I feel for everyone who's getting their ass kicked daily.

 

[jay777]

That's tough going, Jay, as I said in past, I feel for you man. I feel for everyone who's getting their ass kicked daily.

That's why I compare, to try to relate.

 

[billie48]

Helps me too. Dr. Nagler's Niagara Falls story comes to mind. Hope he never admits he just said that to make us feel a little better

He is telling the truth. Some tinnitus is of such piercing nature in pitch that it can penetrate roaring sounds of waterfalls and raging rapids. I often said I could hear my tinnitus screaming above the raging and roaring rapids in the wild salmon rivers I fish. But that is the thing, if I focus on that bone wrecking pitch of my tinnitus and then having all sorts of cognitive distortions about how my life is wrecked, and how the rest of my life will be facing such 'hell' of a sound, then ya, my life is ruined for good. On the other hand, rapids are some of the best spots to hook a salmon during floods as migrating salmon are confined to much narrower travel lane and with denser fish it is much easier to catch one. So while I can hear my tinnitus in front of the rapids if I choose to focus on it, the minute a salmon is on the line doing powerful runs, what tinnitus? Each person will need to find ways to alleviate their sufferings with tinnitus, as each will find things meaningful and interesting to do. If CBT tells you that you that cognitive distortions arising from having tinnitus are something that can be challenged and disproved, and you muscle up enough muscle and spirit to take on the challenge to disprove those cognitive distortions, you win the psychological battle and hopefully reduce the mental suffering, which is a major aspect of tinnitus sufferings.

What I am trying to say is that CBT is not there to cure T. It is there to lessen the distress of living with intrusive T to the point we can still function and enjoy life. It may help some but not all. It is important to not have an unrealistic expectation for it. Those of us who are using CBT or some aspects of it to help ourselves and others do not promote CBT as a cure of T, but something to help us cope with T better. Of course if your T is from stress and anxiety buildup, then CBT will probably go a long way helping this type of T when your anxiety and stress level is much reduced by following some CBT approaches. Even if your T is not caused by stress and anxiety, the trauma of a new T will definitely generate much stress and anxiety which then aggravate T. So if CBT can help reduce some people's stress and anxiety level to more manageable level which then hopefully reduces the intensity of T, CBT has done its job in my book. My humble 2 cents.

 

[fishbone]

It is important to not have an unrealistic expectation for it.

I do feel for these people, really do. I had so much expectations, when it came to possible solutions that might get rid of my tinnitus. I tried everything under the sun and I have felt many disappointments like many on this site. I changed the way I thought and put some expectations on myself and how I was going to try things and manage to live with tinnitus. The current version of fishbone, has gone through lots of transformations and I am still evolving as all of these folks are.

A cure would be beyond amazing, I hope we find it. Till then we need to try to manage our lives and make it work with tinnitus. That's why lots of good folks come here and share their wisdom on how they can manage to live a life with tinnitus.

CBT, TRT, talking it out, yoga, meditating, exercise are ways to help us possibly move forward, in our lives. If @Jazzer creates a meditation video or series i'll be his first customer

 

[Bndsmheowqhe]

Because militant proponents of it spend an inordinate amount of time trying to convince everyone else that it works.

 

[Gman]

Pretty inflammatory thread here... way to go @Ed209.

I'm probably going to be repeating what others have said already. Personally, I think CBT has a place for many issues, but it shouldn't be a replacement for finding real treatments/cures that target the actual issue and provide relief, in this case it is the elimination or reduction of tinnitus. So, really the core of it is that people don't want CBT to be a drain on a very finite amount of tinnitus funding and they don't want a perception to exist in the wider world that it is all tinnitus sufferers need - because it is quite clearly NOT! We all want research into actual treatments and cures to keep going!!!

Research into CBT by places like Murder University... uh I mean Maastricht University, would have us believe CBT is all tinnitus sufferers need.

Imagine if you could have your music career back and also live in silence. CBT is never going to allow that because it doesn't change the underlying issue(s).

 

[Ed209]

Pretty inflammatory thread here... way to go @Ed209.

I'm probably going to be repeating what others have said already. Personally, I think CBT has a place for many issues, but it shouldn't be a replacement for finding real treatments/cures that target the actual issue and provide relief, in this case, it is the elimination or reduction of tinnitus. So, really the core of it is that people don't want CBT to be a drain on a very finite amount of tinnitus funding and they don't want a perception to exist in the wider world that it is all tinnitus sufferers need - because it is quite clearly NOT! We all want to research into actual treatments and cures to keep going!!!

Research into CBT by places like Murder University... uh I mean Maastricht University, would have us believe CBT is all tinnitus sufferers need.

Imagine if you could have your music career back and also live in silence. CBT is never going to allow that because it doesn't change the underlying issue(s).

This goes way deeper than I realised and has clearly really touched a nerve with many people here.

I agree with what you say that nobody wants research money being spent on CBT. I think that goes without saying. However, it seems to me that the annoyance actually comes from how research money is being spent and not what CBT can actually do for some people - as that's what many seem to be basing their arguments and frustrations upon. They are two separate issues, though.

Lack of funding and bad decisions about how some of the money is spent are the real reasons why curative research is moving at a snails pace. The only thing that can help with this is more advocacy work.

CBT as a treatment seems to be misunderstood from what I can gather.

 

[TheDanishGirl]

I am one of those people for whom CBT didn't work. I had CBT therapy twice with 2 different therapists, really tried my best to do the work, but it didn't make a difference either time.

But I am not opposed to CBT. It has a place and it does help some people, so it's always worth a shot, but we also have to be mindful not to forget those who it will not work for. We deserve something that takes at least some of the suffering away too.

It saddens me when CBT seems to take all the focus away from a cure/actual treatment research and when it gets advertised as if it works flawlessly all te time, and if not then it's the patient's fault... that pisses me off... for me it is a merry go round to keep talking about CBT. We know it works for some. It has been more then well documented... now on to more pressing matters. Helping those who will only be able to return to a good life through actual treatments/cure, that target the beast head on.

 

[Jazzer]

TRT - CBT - MEDITATION - TINNITUS TALK etc... are clearly not cures are they.
We all know there ain't no effing cure.

There never has been.
But we all have to get through this very moment we are living in right now.
We want to try to survive - if not for ourselves - then for the sake of our adorable families.
I will use whatever helps even in a small way.
Chatting to each other on here helps me to feel less lonely.
Whatever helps anybody is essential to hang on to.
But 'oh - for a magic pill !!'

 

[Ed209]

I am one of those people for whom CBT didn't work. I had CBT therapy twice with 2 different therapists, really tried my best to do the work, but it didn't make a difference either time.

But I am not opposed to CBT. It has a place and it does help some people, so it's always worth a shot, but we also have to be mindful not to forget those who it will not work for. We deserve something that takes at least some of the suffering away too.

It saddens me when CBT seems to take all the focus away from a cure/actual treatment research and when it gets advertised as if it works flawlessly all the time, and if not then it's the patient's fault... that pisses me off... for me it is a merry go round to keep talking about CBT. We know it works for some. It has been more than well documented... now on to more pressing matters. Helping those who will only be able to return to a good life through actual treatments/cure, that target the beast head-on.

I understand what you're saying Danish Girl, and maybe I'm out of touch or something, but CBT in the UK is not advertised in the way in which it's being represented on here. There might be some charlatans out there who abuse what CBT is actually meant for, but there is for all incurable medical problems. Clinicians know that it's just a way of helping people to cope with the distress and that it doesn't work for everyone. They know it's not a direct treatment of the actual problem and its limitations are known.

With that said, I genuinely believe that there is an echo chamber effect happening here and that it's really exaggerating and inflating the idea that CBT is the enemy and it must be defeated at all costs. We all know it's not a cure in any way shape or form, but just because CBT is available to try really doesn't change the landscape as far as looking for real treatments and a cure goes. If enough people started to say that meditation was holding back progress in research, for example, and the idea was repeated enough, then eventually it would become a group mantra being echoed back and forth. This happens a lot in most forums about various issues. When I first joined this forum over 4 years ago CBT was not viewed in the same way as it is now. It's a recent phenomenon.

Blaming meditation for the lack of an objective treatment or cure would make about as much sense. It's only when you step away from the insular thought patterns - that can develop on forums - that you can see how irrational some of it is.

Everyone has the right to an opinion and I fully respect yours and everyone else's. These are merely my humble observations and opinions.

 

[Autumnly]

CBT as a treatment seems to be misunderstood from what I can gather.

I'm not quite sure how you're coming to this conclusion after several people have explained that their issues are with the way CBT is being promoted and what it's promising...

For example, let's talk about Rilana Cima from the University of Maastricht who created a CBT for tinnitus program. Here she says again that it's the fear of the tinnitus resulting in avoidance behavior that can make the condition debilitating.

• "In the study we thought, what if we try to intervene in this avoidance behavior and we expose patients to their tinnitus sounds," said Rilana Cima, the study's lead author and a clinical psychologist at Adelante Centre of Expertise in Rehabilitation and Audiology in the Netherlands. "If you expose people to something they're afraid of, they actually habituate to this stimulation."
  
• The Fear Avoidance (FA) Model as applied to tinnitus (Cima, 2013) proposes that in people with bothersome tinnitus, fear of tinnitus is a product of catastrophic misinterpretations of the tinnitus sound and that it subsequently leads to safety behaviours that are not functional in the long term, and contribute to avoidance, disability and emotional distress. source

Consequently, she compares tinnitus distress to a phobia since it's only your irrational thoughts and emotions towards the tinnitus that are the issue according to her. I'm not saying Cima's statements don't apply to anyone but they don't apply to everyone and it would be important to mention that.

• 'I am a psychologist and started looking at pain and phobic symptoms. Exposing to it helps people get rid of a phobia, just think of a spider phobia. ' Thus, Cima et al. Developed an exposure-based treatment. "Many people with tinnitus are going to mask the sound, they are going to use noise." source

Dyon Scheijen, who works with her, said they can "ensure recovery" through CBT for tinnitus alone:

• "With tinnitus, a signal is given every time:" This is not good for you ". If we can change that with cognitive behavioral therapy and allow the sound, we will ensure recovery " source

Not sure what her goal was with this statement:

• "Tinnitus is often associated with festivals, but it is actually used to scare young people." source

And this is just ridiculous:

• The study had so much impact that a colleague from Cima wrote that the end of "therapeutic nihilism" is now was finally in sight. source

Here's how the European guideline for tinnitus talked about exposure therapy:

• This way the patient experiences that the tinnitus sound is harmless, not dangerous, and listening to it in silent environments will not lead to catastrophe. They also learn that the aversive consequences are not always triggered. These experiences lead to a "neutralisation" of tinnitus by adaptation of fear expectancies; consequently, the tinnitus becomes less intrusive and bothersome, the more they engage in exposure. source

Lastly, this is off-topic but remember that the European guideline also says this:

• Simply put, patients should not avoid activities they think may make their tinnitus worse. Patients should not be putting their life on hold. Tinnitus does not have to control their life. source

How in the world do you want to raise genuine awareness and show your patients you understand their struggles if you say things like that? There are millions who are severely debilitated by tinnitus and you're telling them "tinnitus does not have to control their life"?

Another big issue with Cima's statements is that she never says that tinnitus can be debilitating in itself and she's given talks before how it's not the tinnitus but your emotional reaction to it that makes it debilitating. In the interview with Hazel, Cima also said she believes the new European guideline will help everyone.

Many people are not debilitated by tinnitus because they're scared of it, they're debilitated by the tinnitus itself. It's irresponsible not to mention that there are different reasons as to why tinnitus can be debilitating.

 

[Harley]

The fact that CBT exists doesn't change this. Another way of putting it is if CBT disappeared tonight we'd be no better off. It wouldn't change a thing.

This is the part of your post which I disagree with.

We can all argue about the efficiecy (or lack of) of the CBT based therapy for the next 50 pages, but that is not the real issue here.

The issue is, that if our ultimate goal is a cure or at least a real treatment, CBT is a huge liability to our cause.

I'm pretty sure that you are familiar with the saying "perception is reality".
In this specific case, since the CBT/TRT combo seems to be the "go to" type of a treatment endorsed by most of the ENT's and GP's, it creates the perception that it works and therefore it removes any urgency to look for a cure or at least a real treatment.

This is why I feel it is of utmost importance that organizations such as ATA and BTA speak out about this by issuing some kind of clarifying statements, similar to one which I proposed above.

We simply need to somehow set the record straight to clear the air.

Based on all the threads I read on this subject I know, that I'm not the only one who feels this way.

It is my personal observation that there seems to be about 50-50 split in opinion on this issue.

 

[Autumnly]

It is important to not have an unrealistic expectation for it.

Unrealistic expectation? Remember when you said this?

They forget that the mental struggle is really what keeps T intrusive and loud. The brain staying in the limbic mode will treat T as a mortal threat and as such it keeps it front and center and it focuses or monitors it non-stop.

CBT tries to soften the blow of the mental struggle and to help calm the brain/nerves to the point that the normal parasympathetic nerve system will return to replace the limbic system. The pre-frontal cortex will take over the processing of the T stimulus from the Amygdala and will make a world of difference in your perception or handling of this T ringing. The pre-frontal cortex has the function to suppress fearful reaction to the T stimulus, making it much easier for a T sufferer to function and think more normally. Then with the sufferer going back to living normally and doing much to distract from paying attention to T, T will slowly sink into the background making habituation possible in due time. How much time? People can have different time frame. Don't compare and don't focus on how long. It will happen, if slowly. That is why even for most authors of the success stories, they take TIME to get there and may differ in how much time needed.

Sounds like your promising a lot in regards to what CBT can do.

 

[Ed209]

This is the part of your post which I disagree with.

We can all argue about the efficiecy (or lack of) of the CBT based therapy for the next 50 pages, but that is not the real issue here.

The issue is, that if our ultimate goal is a cure or at least a real treatment, CBT is a huge liability to our cause.

I'm pretty sure that you are familiar with the saying "perception is reality".
In this specific case, since the CBT/TRT combo seems to be the "go to" type of a treatment endorsed by most of the ENT's and GP's, it creates the perception that it works and therefore it removes any urgency to look for a cure or at least a real treatment.

This is why I feel it is of utmost importance that organizations such as ATA and BTA speak out about this by issuing some kind of clarifying statements, similar to one which I proposed above.

We simply need to somehow set the record straight to clear the air.

Based on all the threads I read on this subject I know, that I'm not the only one who feels this way.

It is my personal observation that there seems to be about 50-50 split in opinion on this issue.

Again, I understand where you're coming from but medical experts know it's not an objective treatment. They know more than we do as it's their field of expertise.

What you're really frustrated with is the state of curative research and that is due to a multitude of factors including the money that's available to entice top researchers, leadership of various groups, governments, various large institutions, and the voice of the tinnitus community itself.

What we need is more money and awareness, but raising awareness for tinnitus is extremely difficult because nobody seems to want to do it. There was a situation where the mainstream press were all over a particular band, and when I asked for people to help me out by reporting their tinnitus distress stories, guess how many members of this forum helped out? None. I paid for an advert to both raise awareness and to raise some research funds, and guess how many donated? None. Even getting a like or a share for an awareness campaign was next to impossible. Most people would rather remain anonymous than do something meaningful about it. That's not necessarily a criticism but more of an observation.

 

[all to gain]

That was me pre tinnitus. If anything anywhere was making a noise I couldn't sleep. Grew up on a huge dead quiet arable farm where you could hear an owl fart a mile off. Just think some brains might be programmed to be used to quiet. Maybe we can train ourselves to adjust, maybe it's hardwired, who knows.

Same story as mine. Grew up in the countryside where everything is dead quiet at night. Some people hate the lack of noise, but I love it. Now tinnitus has changed everything, but my love of silence will never leave me, even if I am never to experience it again.

I'm not sure we can adjust. For example, people talk about using sound enhancement at night, but for me that's just adding another unwanted sound. I've tried it numerous times, but I always end up switching it off or throwing my telephone across the room. Unfortunately, I can't do the same with my tinnitus. Luckily, as much as I hate it, I am able to sleep 'ok' at present to the lovely sound of the high-pitched loud noise running bilaterally through my head. If it gets even worse that may all change though.

 

[just1morething]

TRT - CBT - MEDITATION - TINNITUS TALK etc... are clearly not cures are they.
We all know there ain't no effing cure.

There never has been.
But we all have to get through this very moment we are living in right now.
We want to try to survive - if not for ourselves - then for the sake of our adorable families.
I will use whatever helps even in a small way.
Chatting to each other on here helps me to feel less lonely.
Whatever helps anybody is essential to hang on to.
But 'oh - for a magic pill !!'

We'll be forever in paradise after we expire. All bets are off if you look at porn though.

 

[all to gain]

What we need is more money and awareness, but raising awareness for tinnitus is extremely difficult because nobody seems to want to do it. There was a situation where the mainstream press were all over a particular band, and when I asked for people to help me out by reporting their tinnitus distress stories, guess how many members of this forum helped out? None. I paid for an advert to both raise awareness and to raise some research funds, and guess how many donated? None. Even getting a like or a share for an awareness campaign was next to impossible. Most people would rather remain anonymous than do something meaningful about it. That's not necessarily a criticism but more of an observation.

I think many people are ashamed to tell people about their tinnitus. No one outside of my family and the doctors I have seen know I have this affliction. And I don't want them to know. Why? Because they would simply not understand, maybe even laugh, maybe say "Man up!" Even my disabled (in many ways) cousin says I am wallowing in my tinnitus. Even my brother and father, who have mild tinnitus, don't understand. No one wants to be laughed at. Many people would just say, "Oh, he's a mental case. He hears sounds."

Not only that but I presume many people think that giving money to causes won't do much. Why? Because they feel no one is listening, no one cares and that only a substantial amount of money would make any real difference anyway. Plus, some of use are in such dire situations that we have little money to spare.

Many of us are apathetic to all of this, as are many of us to party politics and so on. It's a sad state of affairs, I agree.

All that said, tinnitus does sometimes get in the tabloids in the UK, that is when someone has committed suicide over it. It makes for a sensational story to fill a page. And they always mention there is no cure, but they do nothing to start a campaign to find a cure. And when tinnitus gets mentioned on tv it's often put across in a humorous way, as if it's all a joke.

What was the band and why did you need distress stories?

 

[Ed209]

Unrealistic expectation? Remember when you said this?

To be fair to @billie48, he helped me out immensely in my darkest hour and I'll forever be grateful that he was around to do so. I think he has brought an incredible amount of love and support to this forum.

 

[JohnAdams]

Unrealistic expectation? Remember when you said this?


Sounds like your promising a lot in regards to what CBT can do.

Lol, what is the "limbic mode"?

It looks like the people that try to explain how CBT works oftentimes have to make stuff up out of thin air.

 

[Tom Cnyc]

Ok here are the facts:
1. CBT can be helpful for some, not all.
2. It is misrepresented by many of its practitioners, which needs to stop.
3. There are promising treatments on the horizon that may actually treat or even cure tinnitus, therefore.
4. No more research funds should go into studying CBT.

Is there really any evidence of #2? In my 4 years with tinnitus I've never seen it once represented as anything other than it is - a way to stand in the fire and become more comfortable with the heat.

Read through the archives of this and the other board. The sentiment of #3 has been pervasive since at least ten years ago. Don't hold your breath. Also, any of these new developments are at least 5-7 years away from general availability even if they do work. So maybe coping mechanisms in the interim aren't a bad idea.

Please show evidence of research funds being dedicated to CBT. I'm not aware of any. therapists publishing articles. Indicating they've seen positive results is not "research funds".

 

[JohnAdams]

Don't hold your breath.

People much smarter than you think that hair cell regeneration will alleviate tinnitus. Why do you think Frequency Therapeutics are measuring THI in this trial? They just did a trial and they probably have some indication, if not direct knowledge that this is already the case. According to people like you, these geniuses that have discovered how to heal damage that has never happened before are wasting their time.

 

[Tom Cnyc]

I've got screaming loud tinnitus all over my brain and in both ears, I've got chronic pain that is absolutely excruciating that I'm on tramadol and co-codamol for, I've potentially got glaucoma, I have horrible scar tissue all across my chest which limits my movements quite significantly, and I'm ejaculating blood.

I still don't see why CBT has such a stigma. I think it's used mainly as a scapegoat so that people can air their frustrations. A lot of the arguments I've seen have nothing to do with CBT, in my opinion, but it's clear I'm in the minority. That's the main reason why I created this thread so that people could give their opinions as to why it's hated so much.

Holy shit, Ed.

I've had groin reconstruction surgery and I live in daily pain basically from my right shoulder to my right knee from my psoas (which makes a snapping sound with every step) compressing the nerves. When it gets real bad my ball aches. I know what daily pain feels like.

But that sounds brutal.

 

[TheDanishGirl]

Is there really any evidence of #2? In my 4 years with tinnitus I've never seen it once represented as anything other than it is - a way to stand in the fire and become more comfortable with the heat.

Read through the archives of this and the other board. The sentiment of #3 has been pervasive since at least ten years ago. Don't hold your breath. Also, any of these new developments are at least 5-7 years away from general availability even if they do work. So maybe coping mechanisms in the interim aren't a bad idea.

Please show evidence of research funds being dedicated to CBT. I'm not aware of any. therapists publishing articles. Indicating they've seen positive results is not "research funds".

https://www.tinnitus.org.uk/cbt-for-tinnitus-related-insomnia

"The trial is a two-year project costing £73,099."

 

[Harley]

Again, I understand where you're coming from but medical experts know it's not an objective treatment. They know more than we do as it's their field of expertise.

Yes of course they know, but the funding which gets allocated for tinnitus research, is coming from people who know nothing about tinnitus.

This is where perceptions become very important and right now the perception is, that there are bunch of tinnitus treatments available, so this will be reflected by the amount of money they will get.

Not to mention that a big chunk of this money will likely be dumped into this CBT black hole to begin with.
This is why it is important to keep calling it out for what it is.
A desperate measure, that is roughly equivalent to sending someone with an excruciating tooth pain to counseling.

 

[GregCA]

I am one of those people for whom CBT didn't work.

When you say it didn't work, what did you expect it to do for you?