The Victim and the Rapist — An Analogy to Tinnitus and Hearing Disorders

[vermillion]

I am exhausted by the nature of this condition and the incapability of the body to heal, let alone the capability of the body to only make it worse.

What is truly criminal though is the lack of acknowledgement over the severity of this condition.

The only parallel that I can draw here is the victim and the rapist, where the victim finds it really difficult to speak up and to prove its innocence, to the extent of remaining silent and traumatized, while the rapist is out there free and happy.

That's how I see what this condition does to us. It's raping us every day. Asking for help is pretty discouraging because all there is out there is therapy and "coping strategies". When these strategies can't be a good fit for some of us, we are being accused that it is our fault because either we are neurotic, compulsive or just depressed and we just pay too much attention to it.

So we end up being silent among this relentless noise. Ironic...

 

[linearb]

When these strategies can't be a good fit for some of us, we are being accused that it is our fault because either we are neurotic, compulsive or just depressed and we just pay too much attention to it.

Never stop firing your medical providers until you find ones that don't tell you this horseshit.

There may not be a magic bullet out there for you, so doctors may not actually have much to offer, but finding a doctor that can admit that and just say "yeah, some things are really hard to treat, suck to live with, and I can't offer you much besides sympathy" is a solvable problem. Having a person like that on your side can be an asset, if you need to go the medication or compassionate-use-of-experimental-therapies routes.

 

[Drachen]

Never stop firing your medical providers until you find ones that don't tell you this horseshit.

There may not be a magic bullet out there for you, so doctors may not actually have much to offer, but finding a doctor that can admit that and just say "yeah, some things are really hard to treat, suck to live with, and I can't offer you much besides sympathy" is a solvable problem. Having a person like that on your side can be an asset, if you need to go the medication or compassionate-use-of-experimental-therapies routes.

I wish it were easier to find medical professionals who are like this. I always try to do my research, ensure that they have been well-received online via ratings and such, before I go see a professional. I would say in my time living here, I have only seen two that I would consider remotely competent in this respect, and one of them I am still on the fence about.

There's just something fundamentally wrong with the system that has led to so many doctors not really giving a rat's ass about you as the patient and are more concerned with giving you random pills and pushing you through the door.

 

[vermillion]

Never stop firing your medical providers until you find ones that don't tell you this horseshit.

There may not be a magic bullet out there for you, so doctors may not actually have much to offer, but finding a doctor that can admit that and just say "yeah, some things are really hard to treat, suck to live with, and I can't offer you much besides sympathy" is a solvable problem. Having a person like that on your side can be an asset, if you need to go the medication or compassionate-use-of-experimental-therapies routes.

Thank you linearb. I will try hard the following weeks to support that cause. I have already scheduled new appointments (ENT and Neuro), after years of ceasing to seek medical help. In the end I might have to force myself to see a psychiatrist to get medication, because I am seriously suicidal and I try to do my best here. It's just that it's pretty scary with meds, when there's a chance to make things even worse than they already are.

 

[vermillion]

There's just something fundamentally wrong with the system that has led to so many doctors not really giving a rat's ass about you as the patient and are more concerned with giving you random pills and pushing you through the door.

So far my experience was related to that. Most of the doctors I saw tended to be quite arrogant and not willing to truly listen to me.

 

[glynis]

@vermillion, tinnitus is a monster and it can change sounds or add a sound and change volumes, sometimes for a reason or for no reason.

Check out allergies and extra mucus in your eustachian tubes. Hearing and cracking jaw joints, wisdom teeth and the list goes on.

As weeks, months and years go by we pick up information and find ways to cope. Hearing aids can also help.

Tinnitus is definitely a rollercoaster of emotions but try to find the best in life. It might be a noisy at times but never let it stop you in your tracks.

Love,
Glynis

 

[valeri]

I am exhausted by the nature of this condition and the incapability of the body to heal, let alone the capability of the body to only make it worse.

What is truly criminal though is the lack of acknowledgement over the severity of this condition.

The only parallel that I can draw here is the victim and the rapist, where the victim finds it really difficult to speak up and to prove its innocence, to the extent of remaining silent and traumatized, while the rapist is out there free and happy.

That's how I see what this condition does to us. It's raping us every day. Asking for help is pretty discouraging because all there is out there is therapy and "coping strategies". When these strategies can't be a good fit for some of us, we are being accused that it is our fault because either we are neurotic, compulsive or just depressed and we just pay too much attention to it.

So we end up being silent among this relentless noise. Ironic...

Very good analogy!

I always wondered why is it so hard for those damn doctors just to say: sorry I can't help you but I believe you!

The last psychiatrist I saw said he's never in his 25 years of practice heard of anyone having problem with tinnitus (until he met me) and to his knowledge people live normal lives. When I said it's not true he said: that's your opinion not mine!!!!
When I mentioned people committing suicide he said: that's not true, people maybe commit suicide because of depression not tinnitus!

By that stage I was already seeing red and had steam coming out of my ears! All I wanted is to jump over the desk and smash his head.

This whole system is beyond broken and wrong, no wonder, regardless of tinnitus, the number of suicides is on the rise! Words like his combined with agony and hopelessness are enough to tip anyone over the edge.

Another big problem are the organisations "representing us" (ATA, BTA) reinforcing this ignorant and dismissive attitude contributing further to tinnitus not being taken seriously. Why is it so hard to understand that tinnitus, just like any other health problem, can vary from mild to severe is beyond me.

 

[Drachen]

The last psychiatrist I saw said he's never in his 25 years of practice heard of anyone having problem with tinnitus (until he met me) and to his knowledge people live normal lives. When I said it's not true he said: that's your opinion not mine!!!!
When I mentioned people committing suicide he said: that's not true, people maybe commit suicide because of depression not tinnitus!

It's instances like this that make me extremely skeptical of seeing any psychiatrist, psychological, or therapist that doesn't have personal knowledge of either the symptom or people who have had it bad. So many normal people already don't understand the complexities and distress associated with tinnitus, but that's even worse when one is paying to see someone to talk about their issues only to be dismissed or countered by either their ignorance or arrogance.

It's truly amazing that you didn't follow through with smashing his head. What an unbelievable jerk. It should not be this difficult to find professional help with mental health.

 

[valeri]

It's instances like this that make me extremely skeptical of seeing any psychiatrist, psychological, or therapist that doesn't have personal knowledge of either the symptom or people who have had it bad. So many normal people already don't understand the complexities and distress associated with tinnitus, but that's even worse when one is paying to see someone to talk about their issues only to be dismissed or countered by either their ignorance or arrogance.

It's truly amazing that you didn't follow through with smashing his head. What an unbelievable jerk. It should not be this difficult to find professional help with mental health.

The psychologist I'm seeing drew two circles on the board, a big one and another very small one inside the big circle. She said, pointing to the big circle: see, this is your life, and this is your tinnitus (pointing to the tiny circle). Tinnitus is there, it's part of your life but you still have your life to live and enjoy (she's doing big multiple circles, highlighting the original circle)!

I'm sitting there trying to believe my eyes, like really trying to embrace this epiphany but all I see is the reverse reality, big circle representing tinnitus and the tiny (diminishing) one being my life!

I didn't tell her, I was too scared of further disappointment!

In all honesty I don't know if I should laugh or cry because I'm paying to hear that crap

 

[Shizune]

The psychologist I'm seeing drew two circles on the board, a big one and another very small one inside the big circle. She said, pointing to the big circle: see, this is your life, and this is your tinnitus (pointing to the tiny circle). Tinnitus is there, it's part of your life but you still have your life to live and enjoy (she's doing big multiple circles, highlighting the original circle)!

I'm sitting there trying to believe my eyes, like really trying to embrace this epiphany but all I see is the reverse reality, big circle representing tinnitus and the tiny (diminishing) one being my life!

I didn't tell her, I was too scared of further disappointment!

In all honesty I don't know if I should laugh or cry because I'm paying to hear that crap

That is absolutely ridiculous. What a thing to say. Makes me wonder if she would be saying that to someone with schizophrenia who experiences severe auditory hallucinations.

 

[buttercake]

The last psychiatrist I saw said he's never in his 25 years of practice heard of anyone having problem with tinnitus (until he met me) and to his knowledge people live normal lives. When I said it's not true he said: that's your opinion not mine!!!! When I mentioned people committing suicide he said: that's not true, people maybe commit suicide because of depression not tinnitus!

This whole CBT circus seems to completely ignore the severity that this malady can reach, maybe even accompanied by other symptoms. I too am seeing a therapist who has a "tinnitus clinic"; he seems to have a grasp of what is going on and he seems genuinely willing to help (and it's free of charge), but the arguments he provides are poor to say the least. I asked "what if my ailment gets worse?", I guess it's the fear that many folks have; "well" he said "you'll cope!". How am I going to cope? I am here because I am barely able to cope with what I have now, how the fuck am I supposed to cope with a jet engine in my ears?!

 

[Gabriel5050]

@vermillion, I've seen you on the forum for a while now. I sincerely hope you can at least cope better. That's a pretty creative and accurate way of describing tinnitus. I hope you can find power at least in the fact you're not alone. In real life I don't know anyone with severe tinnitus, and just a couple who don't mind tinnitus at all. But we're in the tens of thousands just on this site. And with the loudness of today's world I'm sure the number will increase and the medical world will have to listen to us. We will see this through and come out the other side.

In response to the other posts here:

I've formed my opinion for a while now, that a psychologist / psychiatrist / therapist is very unlikely to truly emphasise with the patient, unless they have been through some real hardships themselves. If it's similar to yours, then even better.

I know this is weird to say. But given how the experiences of "trained specialists" and patients tend to look like they're from totally different worlds, it's the only conclusion I can draw. I don't know how we could solve this, I wouldn't wish tinnitus or hyperacusis to anyone healthy.

 

[dan]

@vermillion, how bad is your hyperacusis?

 

[Zugzug]

The last psychiatrist I saw said he's never in his 25 years of practice heard of anyone having problem with tinnitus (until he met me) and to his knowledge people live normal lives. When I said it's not true he said: that's your opinion not mine!!!!
When I mentioned people committing suicide he said: that's not true, people maybe commit suicide because of depression not tinnitus!

Do you hear that? That's not your tinnitus, it's the sound of my blood boiling.

I wish severe hyperacusis and tinnitus on these people, but only for a month. The full of experience. The ear symptoms AND the lack of hope as it worsens and the medical world keeps blaming you. The knowledge that it may never improve.

It's unbelievable that these people think they are helping mental health.

 

[vermillion]

@vermillion, tinnitus is a monster and it can change sounds or add a sound and change volumes, sometimes for a reason or for no reason.

Check out allergies and extra mucus in your eustachian tubes. Hearing and cracking jaw joints, wisdom teeth and the list goes on.

As weeks, months and years go by we pick up information and find ways to cope. Hearing aids can also help.

Tinnitus is definitely a rollercoaster of emotions but try to find the best in life. It might be a noisy at times but never let it stop you in your tracks.

Love,
Glynis

Thank you @glynis.

I doubt that the ENT will find anything related with mucus etc. I'm 100% sure that there won't be any visible issues under the otoscope. In any case I will let you know. I'm certain that my problem is neurological.

Another big problem are the organisations "representing us" (ATA, BTA) reinforcing this ignorant and dismissive attitude contributing further to tinnitus not being taken seriously. Why is it so hard to understand that tinnitus, just like any other health problem, can vary from mild to severe is beyond

This whole CBT circus seems to completely ignore the severity that this malady can reach, maybe even accompanied by other symptoms.

That's a serious issue. Not only do they nothing to push for a treatment aimed at reducing tinnitus, but they keep dismissing the severity that this affliction potentially can carry. What they could do at the very least is to "educate" the so-called "experts" and update them with the latest research, but it seems that those organizations are still stuck to the outdated TRT dogma. I think that it would be really helpful if the doctors could acknowledge that we are talking about a neurological condition that renders a specific pathophysiology. When doctors don't do that, they are being "partners in crime" by saying that we are just depressed and compulsive, thus making it a big deal. So how the heck are we supposed to convince our people close to us that we are honestly struggling to pull the day off?

ATA and all ATA-ish associations apart from the whole research cause, they could at least do something about pushing governments towards classifying tinnitus & hyperacusis as a disability maybe? In that regard I speak with much uncertainty though, as I am not aware what is the situation in the US or other countries abroad. However, where I live tinnitus & hyperacusis isn't considered a disability and therefore I'm very anxious for what will be next, let alone that there's no official tinnitus association where I live.

There's just something fundamentally wrong with the system that has led to so many doctors not really giving a rat's ass about you as the patient and are more concerned with giving you random pills and pushing you through the door.

Similarly to @valeri, I got from the two "experts" of the field the "wtf look". Both said to me... "Come on, there's no such thing". The one (ENT) said in addition, that we are all hearing tinnitus and distortions, but I am paying too much attention!!! The other (a neuro) seemed to be amused because he was kinda laughing. In the end he just suggested to pop antidepressants, to begin feeling indifferent towards it. Keep in mind that those incidents happened years ago, while I wasn't that bad as I am now. Little did I know...

Makes me wonder if she would be saying that to someone with schizophrenia who experiences severe auditory hallucinations.

That's my point! The victim and the rapist. Go figure how to convince that tinnitus and hyperacusis can drive you nuts and can be serious like schizophrenia! "You had it coming... and he raped you! You were going for it!" Similarly I don't want to get better... I'm just paying too much attention to it. I'm making a big deal out of it. I should have been out there now, moving on with my life! But me, it seems that I'm just a grumpy-spoiled boy that likes to stay homebound uh?

@vermillion, I've seen you on the forum for a while now. I sincerely hope you can at least cope better. That's a pretty creative and accurate way of describing tinnitus. I hope you can find power at least in the fact you're not alone. In real life I don't know anyone with severe tinnitus, and just a couple who don't mind tinnitus at all. But we're in the tens of thousands just on this site. And with the loudness of today's world I'm sure the number will increase and the medical world will have to listen to us. We will see this through and come out the other side.

In response to the other posts here:

I've formed my opinion for a while now, that a psychologist / psychiatrist / therapist is very unlikely to truly emphasise with the patient, unless they have been through some real hardships themselves. If it's similar to yours, then even better.

I know this is weird to say. But given how the experiences of "trained specialists" and patients tend to look like they're from totally different worlds, it's the only conclusion I can draw. I don't know how we could solve this, I wouldn't wish tinnitus or hyperacusis to anyone healthy.

Thank you for your message. I guess you are right about the psychiatrists. That's why I'm desperate. I don't know what to do. I just keeping getting worse. Now I'm more limited than before. I can't think anything else apart from suicide at the moment, but I was never a suicidal person. That option seems also impossible because I love my mother so much. Recently she suffered two major losses. If I go down that road, it would probably kill her too. That's a lot to take...

@vermillion, how bad is your hyperacusis?

I started to get delayed ear pain if I expose myself to sudden high frequency sounds and to phone calls.

Regarding physical sounds, most of them trigger an intense physical sense of discomfort like spasms/tightness inside the ears. Plates, clicking sounds, conversations with people in normal volume, rubbing sounds, traffic noise are too uncomfortable. All these in addition with the dysacusis aspect. So now everything sounds distorted. Like "sharp" / "piercing". Weird is that specific frequencies of loud volume can be less uncomfortable compared to various frequencies of really low volume. Sounds that I used to be able tolerate, at present I can't anymore. I have also developed severe phonophobia. Sounds that I do tolerate, I'm afraid that are harmful, since I have gotten so much worse out of the blue, thus assuming I damaged my ears without being aware that I was exposing myself to harmful sounds.

It's unbelievable that these people think they are helping mental health.

They are criminals!

 

[dan]

Regarding physical sounds, most of them trigger an intense physical sense of discomfort like spasms/tightness inside the ears. Plates, clicking sounds, conversations with people in normal volume, rubbing sounds, traffic noise are too uncomfortable.

That's exactly what I developed! Do you live in Spain? That must be very tough if you do...

 

[dan]

The psychologist I'm seeing drew two circles on the board, a big one and another very small one inside the big circle. She said, pointing to the big circle: see, this is your life, and this is your tinnitus (pointing to the tiny circle). Tinnitus is there, it's part of your life but you still have your life to live and enjoy (she's doing big multiple circles, highlighting the original circle)!

I'm sitting there trying to believe my eyes, like really trying to embrace this epiphany but all I see is the reverse reality, big circle representing tinnitus and the tiny (diminishing) one being my life!

I didn't tell her, I was too scared of further disappointment!

In all honesty I don't know if I should laugh or cry because I'm paying to hear that crap

Valeri darling, by now you should know better, psychologists can't help us...
God I remember talking to you on Video Skype once, I think it was around 2004 and you seemed so happy and smiley with your fish tank pump...

 

[vermillion]

That's exactly what I developed! Do you live in Spain? That must be very tough if you do...

No. Even worse here than in Spain. I would love to move overseas (although I think it's late). When did you develop hyperacusis? Are you homebound @dan?

 

[valeri]

Valeri darling, by now you should know better, psychologists can't help us...
God I remember talking to you on Video Skype once, I think it was around 2004 and you seemed so happy and smiley with your fish tank pump...

Dan my darling of course I know better by now. Unfortunately I need to "prove" it for social security purpose so I'm seeing all these "experts" whose opinion is the only one that counts.

I'm certainly not going around listening to their BS because I believe they can help. Actually all that crap makes me more upset and hopeless.

And yes, when we spoke once I thought it's the worst it can get... How stupid of me!

 

[dan]

When did you develop hyperacusis? Are you homebound @dan?

Yeah, I'm pretty much homebound because the neighborhood is loud...

I've developed hyperacusis over the past year, since the the loud noise which caused my severe tinnitus to turn into catastrophic.

 

[vermillion]

Yeah, I'm pretty much homebound because the neighborhood is loud...

I've developed hyperacusis over the past year, since the the loud noise which caused my severe tinnitus to turn into catastrophic.

That's sucks @dan.

I believe Canada is less noisy than here.

Do you also get pain?
I am getting pain more and more often...

 

[dan]

Do you also get pain?

I do... that's not a good sign.