Letter to a Tinnitus Sufferer
Stephen M. Nagler, M.D., F.A.C.S.
Nagler SM. Letter To a Tinnitus Sufferer. Tinnitus Talk (Australian Tinnitus Association, NSW). 2008 Jun.
Dear [fill in your name if you truly suffer from tinnitus],
I’m so glad I finally found a few moments to write to you personally. I’ve been meaning to write for quite a while, and although I realize others might read this letter too, it’s really meant for you. Only for you.
Approximately 20% of the population of the industrialized world has tinnitus, but most are not tinnitus sufferers like you. Their ears ring, but it doesn’t seem to bother them much. You, on the other hand, have intrusive tinnitus. Not only do you have tinnitus, but your tinnitus has you! Intrusive tinnitus has caused you to suffer. A lot. Sometimes you can barely get through the day, and you’d pay almost any price for some quiet.
Why am I writing to you? It’s because I am one of the world’s authorities on tinnitus suffering. No, it’s not my medical degree that makes me an authority on tinnitus suffering. In fact, no amount of schooling or study can make a person an authority on tinnitus suffering. What makes me an authority on tinnitus suffering is my own first-hand up-close-and-personal experience with tinnitus suffering. I'm fine now, but you can trust me when I tell you that I absolutely understand what you are going through. I recall spending hour after hour, day after day, rolling in bed from side-to-side holding my ears in agony. Tinnitus kept me out of work for over a year. I was absolutely miserable. Every day. All day long. Yes, it is my own suffering that makes me an authority – just like your suffering makes you an authority. You are every bit as much of an authority on tinnitus suffering as I am. And although your friends and loved ones try to understand, they don’t get it, do they?
So let’s talk a bit. One authority to another. I want you to know you can have tinnitus – loud screaming tinnitus – and not be a tinnitus sufferer. I’m not saying that it’s easy. It’s not, but it can be done. Of course, what I want most for you is for your tinnitus to go away completely. That might happen someday. But until it does – if it does – wouldn’t it be wonderful if, over time, your “bad ear days” became “not-so-bad ear days?” Or even “good ear days?” Wouldn’t it be fantastic if you reached the point where you didn’t care about tinnitus one way or another? That’s pretty much where I am now, even though my tinnitus hasn’t changed a bit! It still sounds like a cross between an ear‑splitting teakettle and a roaring jet turbine. Every single day. All day long. But I'm fine. How can that be? Read on ...
Maybe we should start from the beginning. What makes somebody who has tinnitus go to the doctor? Obviously people with tinnitus go to a doctor because their ears are ringing, right? Well it turns out that many people with tinnitus don’t consult a doctor. What do the ones who do have in common? They have ringing in the ears and it makes them feel bad! If their tinnitus didn’t cause them distress, they wouldn’t see a doctor about it. Unfortunately after running a few tests to rule out any significant underlying problems, more than likely the doctor will tell them that there’s nothing that can be done, and they’ll have to learn to live with it. So they walk into the doctor’s office because their ears are ringing and it makes them feel bad, but when they leave, their ears are still ringing … and they feel even worse. At least that’s what happened to me!
Why go to the doctor at all if you’re just going to feel worse when you leave? Because in some cases there may be an underlying problem that requires attention – and besides, the doctor might find a hair or some wax lying up against your eardrum, remove it, and cure your tinnitus. It happens!
Most of the time there won’t be a threatening underlying problem, but there won’t be a “quick fix” either. So here’s what I’d like you to do. When the doctor says, “You’ll have to learn to live with it,” I want you to see it not as a nail in your coffin of misery, but rather as, “Fortunately your tinnitus isn’t caused by something that is a threat to your life.” Then I want you to go about finding which of the various effective approaches to achieving relief best fits your situation.
What do I mean by an effective approach to achieving relief? Well, if you’ll recall that there are a lot of people who have tinnitus that doesn’t make them feel bad (or else they’d have gone to the doctor), and if you’ll remember that the reason you went to the doctor is because your tinnitus makes you feel bad, then it seems to me that until science discovers a universal cure for tinnitus, it might be of considerable value to look at strategies for converting your tinnitus that makes you feel bad into tinnitus that doesn’t make you feel bad.
And that’s what the rest of this letter is all about – one effective approach to feeling better. Will the strategy I am going to suggest make you feel 100% better by tomorrow? Of course not. But I strongly believe it will help you to gradually feel better over time – so that you will find yourself having fewer and fewer bad ear days and more and more not‑so‑bad ear days. Yes, plenty of good ear days too.
Will this strategy interfere with any treatments you might now be undergoing? No. Does it involve diet or medication? No. Does it cost anything? Yes. It costs a little time – ten or fifteen minutes a day. But in order for it to work, you must do it every day! If you will accept as your goal the conversion of tinnitus that makes you feel bad into tinnitus that does not make you feel bad, if you will try not to view partial success as total failure, and if you will resist the urge to look for some sort of magic bullet overnight miracle, then I just might have something for you.
To begin with, I’d like to ask you to accept a concept that is completely valid, but that people who suffer from intrusive tinnitus often have a very hard time accepting: The key to converting tinnitus that makes you feel bad into tinnitus that does not make you feel bad lies in learning and effectively applying the tools that significantly impact your reaction to your tinnitus.
Hard as it is to believe, many people with incredibly loud tinnitus are not at all distressed by it. And some people with relatively soft tinnitus are completely overwhelmed. The same is true for people whose tinnitus varies in pitch, timbre, the number of different tones, consistency, etc. So if the same tinnitus sound is no big deal to one person, yet is overwhelming to another, the only possible factor at play is how each person reacts to his or her tinnitus.
It is extremely important to understand the fact that our reaction to tinnitus is a subconsciously‑mediated event. We cannot simply “decide” to react differently to tinnitus. Nor is the ability to impact our reaction to tinnitus a question of strength, character, or determination. But that said, it is also important to realize that no matter how loud our tinnitus, whether it is constant or intermittent, whether it is high-pitched or low‑pitched, and whether it contains one sound or multiple sounds – if somehow we didn’t react to our tinnitus, we wouldn’t feel bad. We couldn’t feel bad. Why? Because how we feel is a reaction.
Right now you’re probably thinking: “Fine. Even if I believed the key is in my reaction to my tinnitus (and I’m still not sure I buy it), what does that have to do with converting tinnitus that makes me feel bad into tinnitus that does not make me feel bad?”
The answer is that the primary determinant of how we feel is how we think. The best illustration of this important principle can be found in a story that I first heard from Dr. Laurence McKenna, a brilliant and dedicated UK psychologist and cognitive behavioral therapist.Fred gets into a subway train that is overflowing with passengers. A man starts poking him in the back with an umbrella for no reason at all. What happens? Fred gets angry of course. His pulse quickens, his blood pressure rises, and his face turns red. But when he turns around to tell the man to stop poking him in the back, Fred sees that the man isn’t carrying an umbrella. He’s carrying a gun. What happens now? Fred’s face turns pale, his palms grow moist, and his mouth becomes dry. He reaches into his pocket to hand over his wallet, but when he turns around again, Fred discovers that the would-be robber isn’t carrying a gun after all. In fact it’s a blind man with a cane who is struggling to find a safe location in the moving train. The color returns to Fred’s face, his pulse slows, and his blood pressure normalizes … as he assists the man to a nearby seat. So what has happened here? Within two or three minutes, Fred has felt anger, then fear, and then compassion – along with the physical changes generated by these three powerful emotions – all because of his thoughts about a few pokes in his back.
As you can see from this story, how our passenger feels as a result of the poke in the back is greatly influenced by how he thinks about it. All well and good,” you are mumbling under your breath, “but intrusive tinnitus is no mere poke in the back.” And you’re right. That’s what makes this process challenging. But the principle remains the same, and I would like to suggest how you can use it to your great advantage.
Maybe it would help to look at what makes intrusive tinnitus different from a poke in the back. We recently discussed this question at a tinnitus support group meeting. The members of the group listed several explanations:
- Fear of an unknown danger. We notice tinnitus one day and figure it will soon be gone, but it isn’t. Surely it will be gone by the following morning, but it's still there. And the next. And the morning after that. So we begin to wonder if it will ever go away. And if it doesn't, what will happen to us? To our ability to concentrate? To our joy of life? To our hearing? How will we function? What is causing it? Is it a tumor? Will we die?
- The prolonged continuous presence of a neutral stimulus. Tinnitus – even relatively soft tinnitus – doesn’t go away.
- “Negative counseling.” Our ears are ringing. It’s not getting any better. We mention it to a friend. And our well‑meaning, but short-sighted friend recalls, “I once heard about a guy who had it so bad that he …”
- Tinnitus is amorphous, not directly measurable, silent to others, and invisible to all.
So there are indeed plenty of reasons for the differences between intrusive tinnitus and that poke in the back. But in the final analysis they are both stimuli, and (with the exception of the pain and temperature stimuli, which have unique neurological pathways) the primary determinant for how we feel as a result of experiencing a given stimulus is how we think about that stimulus, a process over which we have little direct conscious control.
Having laid some important groundwork, I would now like to tell you how you can begin to convert tinnitus that makes you feel bad into tinnitus that does not make you feel bad. I ask only two things. First, please invest the time – a few minutes each day – to doing exactly what I am going to suggest. It might sound like “busy work,” but it’s not. Give it a fair trial of at least three or four months. Second, do not equate less than 100% success with failure. Remember, the idea is to use this strategy to help you feel better gradually – so that you will have fewer and fewer bad ear days … and more and more not-so-bad ear days.
Invariably people who suffer from intrusive tinnitus develop thought patterns based more in emotion than in logic. For example, I clearly remember a morning in 1994 when – literally tortured by my screaming ears – I told my wife that my tinnitus was so bad I couldn’t get out of bed. “OK,” she said, as she sat down in a chair in our bedroom to read the newspaper. Half-an-hour later, when I got up to go to the bathroom, she asked me if my tinnitus was better. I told her it wasn’t any better at all – in fact, it was worse. My wife then asked why I wasn’t still in bed. And she had me! Obviously my earlier statement that I couldn’t get out of bed because of my tinnitus came from a place of emotion – not a place of reality. Such thoughts are called “cognitive distortions.” And very understandably, the more stressed, distressed, or depressed we are due to our suffering from intrusive tinnitus, the more deeply ingrained are our cognitive distortions. These cognitive distortions serve only to reinforce our negative feelings, thereby resulting in more cognitive distortions. The result is a profoundly self‑defeating vicious circle. To impact our reaction to tinnitus, first we must learn how to identify our cognitive distortions, and then we must learn how to challenge them. In their (now out-of-print) book Tinnitus: A Self-Management Guide for the Ringing in Your Ears authors Jane Henry and Peter Wilson gave examples of twelve cognitive distortions commonly experienced by people who truly suffer from severe intrusive tinnitus. You might recognize some that apply in your own case. (And I suspect that you can come up with plenty of your own.) Here is the list that appears in the book, copied with Professor Wilson’s kind permission:
An example of overgeneralization:
An example of all-or-nothing thinking:
- Because of my tinnitus I was awake all night. Every night will be the same.
An example of filtering:
- Before I had tinnitus my life was perfect. Now my life is ruined.
An example of mind-reading or jumping to conclusions:
- My tinnitus is much worse after the party. I enjoyed the company but my tinnitus spoiled everything.
An example of magnification or catastrophizing:
- When I have to ask people to repeat things because I don't hear well, I know they think I'm an idiot.
An example of minimization:
- My tinnitus is louder – I know I'll become deaf.
An example of personalization:
- So what if I managed my tinnitus today? I know that is a fluke.
An example of jumping to conclusions:
- I was so annoyed by my tinnitus that I ruined the night for everyone.
An example of emotional reasoning:
- The tests say that my hearing is OK, but I know I'm going deaf.
An example of "should" statements:
- My tinnitus makes me feel so hopeless. I know there is no hope.
An example of labeling:
- Having tinnitus should never upset me.
An example of blaming:
- Having tinnitus and hearing loss means that I am totally disabled.
My suggestion to you, derived from the work of cognitive behavioral therapist Aaron T. Beck and modified from a strategy found in Henry and Wilson’s book, is designed to break the vicious circle that reinforces the negative emotions that make you feel bad regardless of the loudness, pitch, timbre, etc. of your tinnitus. To this end, each time these (or similar) cognitive distortions cross your mind, I want you to stop what you are doing as soon as possible and write them down. Then, below each cognitive distortion, list all of the reasons it represents illogical thinking. The writing part is essential. This is not merely a mental exercise. You must write down your thoughts and review your notes from time to time.
- I wouldn't be so annoyed with my tinnitus if my family understood.
For instance, if you find yourself thinking, “I am such a burden to my family,” write it down. Then ask your spouse and children to take a few moments to recall all the things they have done during past week that have nothing to do with your tinnitus. I mean everything – from working to school to athletics to music to art to video games to reading a good book to playing a round of golf. Write each one down under “I’m such a burden to my family.” Stare at it. Prove to yourself – documented in writing – that while your family would dearly love for you to find some relief, they are still accomplishing quite a lot in their own lives. Whatever burden there is … is largely in your mind.
If you will commit to doing this exercise religiously – to writing down your negative thoughts and challenging them with logical, reality‑based examples – you cannot help but begin to impact your subconsciously‑mediated reactions to tinnitus. And slowly, over time, you will break that self-defeating vicious circle. You will begin to realize that you are having fewer bad ear days and more not‑so‑bad ear days – because the tinnitus that has been making you feel bad is gradually becoming tinnitus that does not make you feel bad.
From one authority to another, I sincerely wish you well.