As a working therapist, I am very familiar with Kubler-Ross’s five stages of grief model, which hypothesizes a series of states an individual passes through in accepting his or her own death: denial, bargaining, anger, depression, and acceptance. Although the model was originally proposed to describe an individual’s reactions to his or her own death, it has since been applied to all types of loss: divorce, the death of a loved one, even unemployment. As a tinnitus sufferer, I have come to realize how closely these five stages track my own experience with tinnitus.

Denial

Kubler-Ross’s first stage is denial, the belief that this can’t possibly be happening to me. This concept captures well my state of mind more than three years ago when I was initially diagnosed with the condition. It began when I asked my wife about the funny noise emanating from the ceiling, which to me sounded like the toilet was running.  Except why would I hear the toilet running in the ceiling? As the day progressed, the running toilet transformed into a million crickets, and it was now like I had embarked on the camping trip from hell. Unable to sleep that night both because of stress and the sound, I spent the early morning hours in consultation with Dr. Google, ultimately coming across something called “tinnitus,” a condition I had been blissfully unaware of up until that time. 

But it ticked all the right boxes. Tinnitus most often occurs later in life and I was in my mid-fifties. Its onset is frequently correlated with hearing difficulties, and I had been having hearing problems exacerbated by spending nearly a half decade in China. Stress can bring on tinnitus. For some time now I had been working twelve-hour shifts as a therapist in a psychiatric emergency room. Although there was no agreement on the pronunciation of the term, there was universal consent on a couple of crucial matters:  the condition was in all likelihood permanent and there was very little modern medicine could offer to alleviate the symptoms. A visit to an audiologist confirmed both the diagnosis and prognosis. With truth staring me squarely in the fact, I went to the only logical place there was to go: denial.

Denial is not simply saying “no.” If I am accused of a crime I did not commit and I insist on my innocence, this is not denial. In the clinical sense of the term Kubler-Ross intended, denial involves the rejection of reality because it is too painful for the ego to endure. As such, denial involves a level of irrationality, but it is not simply irrationality. If it is raining outside and I insist that it is not and go outside unprepared and as a result catch pneumonia, my action could be dubbed as irrational. But it is not in the clinical sense of the term denial. By contrast, the former business executive who is now homeless because of his addiction but insists everything is fine is in denial. Where he differs from the pneumonia patient is that his rejection of the truth staring him in the face is carried out for a perfectly rational reason: the ego is trying to protect itself from a painful but obvious truth. It is in a sense rational irrationality; there is a method to the madness.

The denial of tinnitus takes place for the same reason; it was too harsh of a reality to accept. In my own case, I told myself  that because stress had played a key role in the onset of my tinnitus, if I could reduce my stress my tinnitus would disappear. Although this might sound rational (or it might not), there is no evidence for this anywhere in the literature on tinnitus; hence the denial part. When it comes to tinnitus, that’s not how stress works.  Tinnitus isn’t like a sunburn that goes away or a skin condition that clears up with the passage of time.  The stress with tinnitus is more like the stress of placing a heavyweight on a glass table top so that when it shatters that tabletop is not coming back together.  Or the stress that results in heart attack that leaves the organ permanently damaged no matter what you do afterwards. And this was a reality I was a long time in denying. 

Bargaining:

Once it sunk in that the tinnitus was not going anywhere, the bargaining set in. It is interesting to deconstruct the notion of bargaining as it applies to the five stages. When we seek to bargain with someone, it usually involves the notion of a seller whose price we are trying to change in our favor. In the five stages model, the bargaining phase involves the notion of a reprieve, the idea that somehow the sentence of death can be avoided, or at least delayed, by my offering something to the forces that have decreed this fate on me. So the person with the terminal cancer prognosis tries to bargain with the seller (fate, death, or God, whatever you wish to call it), trying to arrange terms on which the death sentence will be lifted. If they change their ways, their life will be spared, or they may simply say they are willing to accept the sentence if they are only provided with a little more time. Bargaining is generally viewed to be the stage individuals stay in the shortest, since all but the most delusional realize our will is powerless to affect the outcome of the situation.

In the case of tinnitus, my bargaining took the form not of bargaining it to go away. Rather, through my research I came to realize that due to hearing loss my brain was interpreting certain electrical signals as noise. If this was the case, then there would have to be some way to jam the electrical signal. My bargain, then, was that I would pay any price, undergo any surgery, wear any device so long as it would make the tinnitus stop. Alas, although research in this area continues, no such device exists. It is instead as the National Center for Rehabilitative Auditory Research declares: “Unfortunately, there currently is no therapy that can safely and consistently reduce the loudness of tinnitus.”

Anger

Kubler-Ross states that there is no necessary progression when it comes to the five stages, that not only do they not occur in order but you can cycle in and out of stages multiple times. Looking back, I believe that while Kubler-Ross places anger after denial, for me anger came after bargaining had failed. It took the collapse of denial and bargaining before I faced the realization that tinnitus was something I was stuck with. At this point, realizing that the tinnitus is here to stay, anger set in.

Anger seems to arise when we perceive that harm has been done to us or our loved ones. At such times, we naturally look for a cause, and we invariably turn our anger towards the cause of that harm.  I can be angry at the guy who won’t let me merge into traffic or angry at someone standing in a grocery line ahead of me who has more than the allotted number of items in their cart. Each of these cases involve the notion of a slight, a perceived injustice. To take an example at the macro level: when the Twin Towers were attacked on 9/11, a great anger national anger developed towards those believed to be responsible for it.

Anger seems linked to the need to fight back and we can see how it is useful from an evolutionary standpoint. Those individuals who failed fight back against harm probably did not live to pass on their genes. But what about when there is no one to be angry at? Your elaborate outdoor wedding plans are ruined by a freak rainstorm or your otherwise healthy spouse drops dead of a brain aneurysm? The need to find a villain for harm done to us is so strong that at such times believers will often turn their anger towards God. The rest of us either accept that stuff happens and move on or, if we are especially enamored of finding a culprit for the crime, we turn suspicion towards ourselves. I was stupid to plan an outdoor wedding, or I should have taken my spouse for a checkup and this wouldn’t have happened.

The causes of tinnitus make difficult objects to express anger towards: age related hearing loss, circulation problems, exposure to loud sounds. Somehow, though, I managed to turn this in to being about me. My tinnitus was my fault because of what I had done and how I had lived. I had exposed myself to loud sounds by spending a half-decade and China and had not taken care of my stress on my new job. Naturally then, I turned my anger towards myself. And anger turned inwards is one definition of depression.

Depression

The statistics of depression among those afflicted with tinnitus are truly astounding. According to the International Tinnitus Journal (June 2017) major depression has been described in 33% of tinnitus sufferers. Anxiety is even higher, but that’s another blogpost. It is important to note the depression is not merely sadness. Major depression requires a combination of at least five of the following symptoms for a period of at least two weeks: depressed mood most of the day, markedly diminished interest in activities or pleasure, significant weight gain or loss, insomnia or hypersomnia, psychomotor agitation or retardation, fatigue or loss of energy, feelings of worthlessness, diminished concentration, recurrent thoughts of death or suicide. There is as well a chicken and an egg problem here. If the noise of your tinnitus is causing you not to sleep and because you are not sleeping you feel fatigue and loss of energy, then it is not the depression that is resulting in your symptoms, although as far as you are concerned that probably does not matter.

As I slid into depression, I knew that it was my self-blame that was in large part fueling the descent. As a therapist, it was easier for me to reach out for help; and since I knew what I needed, I knew who to reach out to. Working with a form of Cognitive Therapy called Cognitive Processing Therapy I ultimately was able to redirect the blame away from myself. I will talk more about this in another blogpost. I also needed a basic attitude adjustment, which took me outside the realm of cognitive therapy.  I will discuss this elsewhere as well. Like with trauma, most people eventually overcome depression. The sad part is that they often stay in that depressed state longer than they need to. In my case, getting help was vital to moving on with my life. This is not the case with everyone. But if you are suffering from depression or think you might be, understand this is perfectly natural and consider reaching out for help.

Acceptance

To accept is not to resign oneself. In fact, if you would describe your state as one of resignation to fate, I would suggest you may well still be stuck in the previous stage. Acceptance frees up energy that is wasted in looking back and allows you to put that energy into the active management of your condition.

A sound plan is an essential part of managing tinnitus; as well it is something you should be updating on a regular basis. Mindfulness has been shown to reduce the distress related to tinnitus, and one should develop a regular mindfulness practice. Also, cognitive therapy is not just a one-time thing. Rather, your therapist should teach you the fundamentals of the cognitive method so you ultimately become your own therapist in this matter. Joining a support group can also be vital to maintaining well-being. Reading the research can allow you to take time to read the see what is on the horizon and keep hope alive. The best place to find this is through joining the American Tinnitus Association. All of this takes time and energy that you will not have if you are stuck in one of the previous stages. But the effort is worth it. Feeling empowered rather than powerless is one of the best ways to make sure you do not slide back into depression, or go there in the first plac.

A sixth stage?

David Kessler, who worked with Kubler-Ross has been granted permission by her estate to add a sixth stage to the process: finding meaning. This stage is vital when it comes to tinnitus, and it is something I will be addressing in my next blogpost