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The Consumer Handbook on Tinnitus
CHAPTER FOUR
Reactions to Tinnitus

Soly Erlandsson, PhD

In this chapter the focus is on your reactions toward the tinnitus sound itself, toward the situation that tinnitus creates and toward other peoples’ attitudes and behavior. People’s reactions to tinnitus vary widely from one individual to another. The different topics in this chapter are meant to give you a diversified impression of the various distressing aspects that tinnitus can trigger:

Grief over the loss of silence
Emotional upset and panic
Preoccupation with harmful sounds
Tinnitus and sleep disturbance
Week and vulnerable feelings
Fear of losing your mind
Guilt
Adjustment to the sound
A need to share your experiences with others
The pearl and the oyster

Grief over Loss of Silence

In many instances tinnitus onset can give rise to fear that the sound is going to be permanent, meaning that you will never again experience silence. As human beings, we have different needs, and when some of these most important needs cannot be met, we simply do not feel very well. This onset of tinnitus is especially stressful to people who love to be in silent places because it gives them time to reflect and think about things that are of vital importance to them; in this chapter, focusing on peoples’ reactions after the onset of tinnitus. It’s important to emphasize that negative reactions in most instances subside after a few months or a year or so. Reasons for prolonged negative reactions are unknown and also vary across individuals. It might be related to the cause of tinnitus (for example a noise trauma or other chronic disease that influences many aspects of a person’s life).

There are many different situations and conditions that can give rise to sorrow when you suddenly experience a loss of hearing or onset of tinnitus or become extremely sensitive to loud sounds. To become hearing impaired is an example of a situation that involves all aspects of life; you as an individual, the members of your family, work and leisure time. In the same way, tinnitus can cause both acute and prolonged problems at different levels of social life. Considering this, not only must you be given an opportunity to express grief over the loss of silence, but also be able to grieve that you no longer feel engaged in your work as you used to, or that you cannot enjoy meeting your friends as before. Life is not what it used to be, and when you look back on the situations you enjoyed most, you realize that these situations are now more distressing than joyful.

Interviews with patients for whom tinnitus has been a severe problem have made it clear to me that tinnitus also can deprive someone of her or his freedom (Erlandsson, 2000a). This statement is an example: “Then my irritation concerned the fact that in many ways, I was deprived of my freedom, that there were things that I couldn’t do. For example, I couldn’t play the guitar.”

What does it mean to lose one’s freedom? Usually we talk about freedom as something we experience in a democratic political system where we have the freedom to speak and write. But freedom can also mean being able to act and do things spontaneously in a non-reflective way. It can be the most natural thing for me to take my guitar and play, if I like to do so. But when music can make me worry about possible negative effects on tinnitus, I can no longer enjoy playing the guitar. It’s not a spontaneous act anymore.

There are many examples of restrictions in peoples’ freedom of actions when tinnitus occurs. You may have to avoid certain situations and become limited for a number of reasons due to the noise in your ears. In young people, tinnitus can hamper their future plans. A young woman worries about her education and how to manage her studies due to the annoying sound in her ear. A young man is afraid that his future plans to become a professional musician cannot be fulfilled. To be plagued both by tinnitus and dizziness can also interfere with a woman’s desire to have a child. For a period of time I saw a patient who had Ménière’s disease and was very ambivalent about being a mother because of her tinnitus, dizziness and hearing loss. However, she eventually decided that not having a child would mean that she had let the tinnitus decide her future. However, she took control of her life and became a confident and responsible mother, a more appropriate and satisfying situation.

The loss of silence can have an impact on people for a long time. Normally, when we lose something there’s a period of grieving, which is often appropriate and helpful. It can be hard for a person with tinnitus to grieve because he or she does not feel that it is correct to mourn the loss of silence. The sorrow is often ignored by professionals who are most concerned with how the patient’s problem should be managed within a healthcare regime. One role of the professional would therefore be to create an atmosphere where such a grief process can take place. We must remember that it’s normal to grieve over things we’ve lost in life. The grief for silence or hearing loss is very similar to grief for the loss of a loved one. Some people can manage to grieve over their loss by themselves while others need comfort and help in order to go through this process. There are, however, very few rituals, if any, to help us manage a loss that occurs when someone becomes hearing impaired or acquires tinnitus. You should feel free to discuss this loss. Tinnitus is an unrecognized affliction and is not apparent to anyone else.