Why Is There Such a Stigma About Cognitive Behavioural Therapy?

Well, a misconception that a lot of people have is that this kind of work will "fix" them, or make the current moment just nothing but an everlasting space of joy.

That's not how it works. The practice is simply to observe what is there and discard judgements. Notice when you become distracted, do not judge that, but simply refocus.

It's very tempting to stay in a space where we regret or miss the past, or where we are either desperate to get to some future, or anxious about that future. It's very easy to believe that staying focused on future treatments that may never emerge is "necessary to survive". I felt that way for a long time; I have since decided that focusing on anything other than the current moment and what's in front of me now, actually leads to pain -- because that striving state, of, "I want so badly to be in the future" -- that, itself, is painful. It's distressing. It's suffering.

The current moment may also be full of pain, or distress, and we may well continue to feel bad about these things. However, we all have some degree of agency in how we feel, and ultimately that's what all this boils down to, to me: using agency to affect whatever change is actually possible, but doing so very much focused on the current moment and setting all else to the periphery.

Your milage may vary. When I was like 24 I had this really naive view of meditation, that if I just did it long enough or hard enough I'd have some life-changing moment of clarity and everything would be different.

That's just not how it worked for me. It has been life changing, and everything is different, but so far there's been no moment-of-nondualism-and-oneness-with all. Maybe glimpses of a little of that, but, mostly it's just a practice and the more I do it, overall the better a grip I have on what my mental state is, which puts me in a better position to do something about it.

I think that one reason people often get scared off by meditation early on -- it's very easy to sort of skim along the surface of your life in a lot of ways, thinking that all sorts of structures are fine and normal (meaning, personal cognitive structures, as well as the realities of your upbringing and station in life). But, if you just sit down and try to slow down and focus on breath -- you start to realize there's all this other stuff in your head and in your life, and a lot of it might be scary and uncomfortable in a way you've never dealt with before.

This is actually why I think it's dumb to try to get in to meditation when you're in a severe distress state. It has a strong possibility of being destabilizing at first.

 

No, they are not. It's vague wording that ignores that tinnitus can nonetheless be debilitating. Making it seem like we can all "manage" tinnitus, for example, ignores people who are unable to work due to it.

Many people are "managing" their lives with tinnitus but their quality of life is greatly reduced. The way CBT is being promoted usually ignores the fact that tinnitus can be life-limiting and instead creates the idea that we can all learn to "live well with it" - but each person gets to decide for themselves what "managing" and "living well" means.

Also, you're not representative of everyone with severe tinnitus. If you can live well with tinnitus or find your life meaningful despite the limitations you might have that's your choice but you don't get to decide that for other people. I am managing my tinnitus and am nonetheless unable to work, CBT is promising far more when it talks about people learning to manage their tinnitus.

Oh, absolutely! They could even say most people (though I've also seen many articles that say it helps most people only to then explain the concept of habituation as if the reader is inevitably going to get better). It's also not just about what they say but what they don't say. Just a sentence saying that we nonetheless need medical treatments or that tinnitus can still be debilitating would be a great start. Many of the articles I've read so far are promising too much though not all of them. I think Jazzer posted a thread on here about a clinic in the Netherlands that offers CBT for tinnitus and I loved how they described it.

 

I think we need to consider the bigger picture and the fact that the "outside world" (this includes most of the medical community) has a very hard time with understanding, that Tinnitus can range from a non-issue to debilitating.

This confusion is further fueled by those who claim that "everyone can habituate" and various clinics offering "Tinnitus treatments" (CBT happens to be one of them).
This creates an environment in which it will be easy to assume, that there are already many treatment options for Tinnitus available and there will never be any real urgency to actually solve the puzzle.

This is why I see CBT as a liability, because it just further muddies the already murky waters, as I happen to be one of those people who want a real cure.

The best way of communicating this to the outside world is to stand united and reject any treatments which aren't targeting Tinnitus directly.
If we settle for these pseudo treatments which target only the effect (rather than the cause), it is all we will ever get.

Anyone who ever worked in a union shop knows, that the best way to get what you want is to stand united.
I'm not looking to start a debate on the pros and cons of unions, but if I expand this analogy further, anyone who talks up the benefits of CBT is the equivalent of someone crossing a picket line to work for less, therefore undermining those who demand more.

"Squeaky wheel gets the grease" just about sums up my thoughts.

 

You have no idea what struggles I face daily. I will not resort to your style and assumptions

 

I agree with @Autumnly.

CBT's issue is that the providers promise too much and that is understandable because they are selling a service and it is their bread and butter. It's rare to see any CBT practitioner acknowledge the need for treatments that reduce the loudness of tinnitus.

CBT can be helpful though for some people and it shouldn't be shot down so nastily as some here do.

 

What I don't like about CBT is that it does not fix the underlying issue, the damage to the auditory system which causes the tinnitus in the first place, which itself causes the depression and distress, whereas money that could be put towards an actual solution/cure (rather than some palliative treatment) is diverted towards CBT, this in effect essentially delays hearing loss recovery research extensively.

Is CBT better than nothing? Sure, but the truth is, once we have a real treatment, we won't need to undergo CBT anyway, CBT is just a distraction in the hope of making patients cope and providing them with "something", because there is nothing else. This to me feels nothing but a tool for those so called "tinnitus experts" who still need to get paid and attend or host conferences.

 

You have my sympathy. I have had a taste of debilitating hyperacusis that was ruining my life and stopping me from playing with my young son and since then have recovered to a very good place where my main problem is that I'm too afraid to play my drums and shoot my guns. I genuinely wish that you and the rest of severe sufferers could find healing like I have.

If I may ask, how bad is your hearing loss?

 

For me, drugs didn't fix the underlying causes of my OCD, but I feel CBT could have done. But in regard to tinnitus, it's the other way around (well if a drug comes out to treat tinnitus).

I'm not so sure that we won't need some type of CBT or counselling. The PTSD alone from suffering from tinnitus, sometimes for many years, may need such an intervention. I doubt if my tinnitus went tomorrow that I would be able to just carry on life where I left off; I think the anxiety over it coming back would always be there is left untreated.

But, here's hoping for a good treatment or even a cure as soon as possible.

 

I would have thought that one of the cornerstones of CBT is not to focus on the characteristics of your tinnitus (volume/pitch etc). You don't want a psychologist to hear your story and say 'Christ that sounds intolerable'. One thing I found helpful with CBT was to leave me with the lingering feeling that maybe my tinnitus was not so terrible or different to others who manage it. Of course this irritated me too as I think mine is the worst that anyone has ever had, but the lingering doubt is helpful at times!

P.S I know mine is terrible

 

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.

 

I agree with that passionately. I find it very irritating reading endless 'papers' written about psychological approaches. Helps some, but we need to move on, quickly.

 

My tinnitus varies like crazy so I bloody well know that loud tinnitus is much harder to deal with than quiet. Completely different kettle of suffering fish.

Plus how do we know for sure that some people just are not wired to find sound more difficult to deal with than others?

So if someone is having a hard time accepting it they shouldn’t necessarily beat themselves up.

Having said that sometimes it does help a bit to think well others deal with this okay so I should STFU.

 

I don't like that about CBT either, but that's not what it claims it can do for you, so it's unreasonable to be upset about it not realizing what it never promised to realize.

That is a much more legitimate complaint, but it's not CBT's fault. The responsibility lies on whoever makes the decision about where to invest research money.

 

What do you do about multiple sounds in your head that you can hear with a power shower on your head? It's not fair really, but I'm carrying on with this miserable situation.

 

I've visited Chronic Fatigue Syndrome forums for many years, and CBT therapy is often discussed in a similar manner to the way it's being discussed here. Many would say something like, "Even discussing CBT gives the impression that CFS is "all in the head", or "just depression", etc. And as @Harley points out, will distract from finding a real cure.

Though it may be considered somewhat simplistic, I generally take a broader view. When confronting any kind of challenge, I try to methodically discern what things are likely to work for me, and what aren't. If I haven't confronted a situation like this before, then I'll have to come up with ways of dealing with it that I've not yet learned in living my life. An analoogy:

My Mom once told me of a situation where a family relative had died, and she was asked to help some of their family organize the funeral arrangements. She was shocked to see their inability to make normal decisions, and equally shocked to see their house in such a state of disarray. It turned out that she was able to help them a great deal with the funeral arrangements, and they were extremely appreciative of that fact.

But they then asked her if she could also help them organize their lives better. It's not that they were of some kind of low moral character with their unkempt house, they had just never learned how to organize a household. This may not be the best CBT analogy, but my Mom essentially showed them how to think and do things differently so that their lives would be easier to manage.

What my Mom did for her relatives strikes me as a form of CBT, and is what I think many on this site are trying to do for themselves or for others. Come up a variety of ideas, tips, different ways to approach things, etc., in the hopes of making an untenable situation a little more tenable. I'm thinking of tips shared by people like @fishbone, @Jazzer, @billie48, etc. as falling in that category, even though they don't refer to what they do or recommend as CBT.

I think broadening out the definition of what CBT is or can do would mean less disagreement as to whether or not it's something that has merit. To me, is seems like something virtually everybody does in varying degrees in the course of their daily lives.

 

That's what's called keeping an honest open mindset. Walk a mile in their shoes and all that...

@Ed209 certainly raised a point about the science on CBT and how it's properly conducted and there are quite a few scientific studies out there. It's one of the few things the BTA recommends.

I definitely second Ed's observation about the general feeling towards CBT here on the forum. It's mostly negative.

Now maybe we should be asking why that is. I'm sure most people including myself haven't tried it but the science around it seems to be sound. They don't claim to address anything other than tinnitus distress and awareness.

I think the fact that there's little love for CBT is not due to forum members not being able to interpret scientific data. (This condition forces one to become self-educated up to a certain degree). We're also emotionally biased because we are the ones afflicted with this hell of a disease and to me it's just a clear sign we had enough of this for a long time. We don't want any money going towards this if it can be spent on finding an actual cure.
There's the same reaction with studies about caffeine and tinnitus, distress and tinnitus, everything that doesn't advance us to a cure.

It's probably overly simplistic thinking that every penny going to CBT means one less towards curative research but again it shows the need for a proper cure. We know some can benefit from CBT for the time being until a proper cure is found. We already know that. No more studies needed.

Researchers have been cautiously talking about curing tinnitus for a decade now. It's this mindset that's going to drive us towards a cure eventually. As a patient group we are almost invisible to the outside world and most of our suffering goes unnoticed. If other people get the impression that we get along just fine with CBT then nothing is ever going to happen. So yes I can somehow understand all the hatred towards CBT. Because a cure it is not and we've had enough of tinnitus.

 

My whole reason for being here is very simple, try to help people to try something that can help them live with tinnitus. Whether it's CBT, TRT, counseling, exercise, meditation, yoga, diet... whatever. I am always searching for ways to find ways to deal with my tinnitus, that will never stop. Will everything work? Of course not, I still try and just look for ways to help my situation and If I get a good feedback from it, I will share and try to help people here...

Tinnitus is a struggle and I know it very well. I have no easy days and mine never goes away and is always loud and aggressive. Yet, I still remain positive and try to help others.

 

I know this to be true. People bitchin' about not being able to sleep with the A/C on low.

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

 

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.

 

Almost as if on cue, I just ran across a testimonial on the CFS forum that fits in with this discussion in a number of ways. One notable point is that in this person's situation, CBT had little to no benefit. However, his testimonial may be a catalyst for some on this forum to experiment with Hydroxyl Vit. B12, especially if their tinnitus is in some way connected with OCD, anxiety, etc.

Here's the testimonial:

My OCD was always pretty mild and none existent through most of my life. However 2 years ago it became severe to the point I was diagnosed by the NHS and it was by far the worst symptom from all of my conditions. It developed into pure OCD and I was unable to manager it. CBT helped a bit however I was unable to control it just by using techniques.

I always had a feeling i had a methylation issue due to my low b12 and gastritis. However my first go to form of b12 was Methyl- B12. After trying Methycobamilin my OCD became much much worse to the point it was unbearable, my anxiety sky rocketed. This made it clear I had some form of methy donor reaction to the methylated b12.

After much research and help from others I was put on the path of sublingual Hydroxy B12. This is B12 in its purest form without any processes being carried out in it.

From the first supplement of 1000mcg i was able to notice a distinct change in my thought processes and my reaction to thoughts after 2 hours. After a week of supplementing I noticed a massive change in my pure OCD to the point it felt none existent. It had been 6 months now and it has been the best 6 months I can remember in my life. My OCD/anxiety feels as if 90 percent of it has been eradicated to the point of how I felt before I got sick. The only time it returns a little is if I forget to take the recommended amount or if I drink alcohol( this depletes b12 stores).

I am writing this in the hope that it helps others. Methy b12 was a nightmare for me however hydroxy b12 has changed my life.

I have to thank others to recommended this to me.

If anyone has any questions or needs help just let me know.

Thanks
Luke​

 

@fishbone - absolutely kept me going in my darkest days.
I admit that we have not always seen eye to eye on everything - but it is high time I repeated that when I could see no way forward, he actually told me,
“Dave - if I can make it - you can make it also, however loud it is!”

I so needed to read those exact words.

I will never forget that buddy. xx

I’d like to add one little detail on how positive encouragement can actually make a real difference.
I would walk around this world thinking,
“It’s so loud - I can’t make it - I can’t stand it - I’ve had it - I will have to leave.............?”

Then I would repeat to myself,
“Fishbone says I can make it
- I Can Make It! - I Can Make It !!”

 

You have worked very hard on putting the pieces together. It's not always going to be perfect, but you are a warrior and those cute cats are kicking that tinnitus in the tail

 

Can I have a consultation?

 

I think there are some misconceptions about my reasons for posting about this. I do not agree with more money being spent on further research into CBT. I think all funds should be spent trying to increase our overall understanding of the condition so that we have a far better chance of seeing a treatment or a cure.

I agree with what @GregCA and a few others have said. It serves a particular purpose. It’s never been about curing the physical issue, although, I can totally understand why people would be frustrated from an emotional point-of-view. However, I think we should be able to rise above this and see it for what it is. I don’t see an upside in universally slating it.

Like I said earlier, if it only helps a few people, then that’s still better than nothing. It’s an option that may potentially alleviate one’s suffering even if it didn’t/doesn’t alleviate your own.

 

Ditto to that one, buddy. I sometimes have more to deal with than my brain can comprehend, but on we go and as the old saying goes, “fall down seven times, get up eight.”

 

You have brought up some good points here for sure Lane.

There could definitely be a big debate about where CBT begins and where it ends.

Yes, even a small, but helpful advice from someone could be considered a form of CBT and I have nothing against that.

But for me, it boils down to what I already stated above.
If we accept CBT for tinnitus as helpful, it is likely all we are going to get in the end.
There however is one good way that would preserve any benefits of CBT without distracting from a cure, but it would involve some major shakedown of the status quo.

Ideally all of the world's leading tinnitus organizations would get on the same page and make some bald declarations, since they are the ones who hold the power to influence how tinnitus is viewed by the masses and the research/medical fields.

Something like:
IMPORTANT ANNOUNCEMENT!!
Due to a mounting pressure from tinnitus sufferers worldwide, we feel the need to make some important clarifications in regards to the current tinnitus therapies available, namely the CBT based therapies.

While we recognize that CBT might be somewhat helpful to some sufferers, it is a desperate measure in a desperate situation.
What we are aiming for are real solutions, which target the actual tinnitus and not just the fallout from it.

We feel that in the 21st century people should no longer have to make a choice between horrible suffering and suicide, as there is currently no real treatment available.
Therefore, on behalf of severe tinnitus sufferers everywhere, we are declaring a global tinnitus emergency.
We appeal to all the governments to release special funds to finance tinnitus research ASAP.

I do realize that something like that would require major balls from ATA and BTA (and others), but I feel it would go a long way towards setting the record straight.

If such announcement was made, I would no longer have any issues with CBT or any other similar treatment.

 

I just wonder how many of you positive people would fair with my tinnitus, oh I forgot we can not compare.

 

This falls into the realm of advocacy work, though, and it’s something the tinnitus community as a whole needs to get behind. 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.

It takes a lot of effort to see the kind of changes the community expects to see, but nobody is prepared to help make those changes happen.

 

That is a misconception. CBT is very specific about what it targets. It's not about a feel-good platitude that a buddy is going to tell you while sympathizing with your condition or "helpful advice". Tons of advice can be helpful, but only a very small subset would be considered CBT. "Don't focus on your tinnitus" is considered "helpful advice", yet it has nothing to do with CBT.

There are tons of free resources to learn what CBT is, should anyone want to get educated before speaking about it.
Wikipedia is a good start: https://en.wikipedia.org/wiki/Cognitive_behavioral_therapy

Relevant excerpt from that page:

Cochrane reviews have found no evidence that CBT is effective for tinnitus, although there appears to be an effect on management of associated depression and quality of life in this condition.​

 

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.