Does Tinnitus Bother You?
It Might Be Time to Join or Form a Support Group
By Trudy Jacobson, ATA Support Group Leader
“It’s only a sound, just ignore it.”
“At least you don’t have cancer.”
“It’s not like it’s going to kill you.”
For those of us living with tinnitus, we hear these kinds of statements often from well-meaning people who advise us to just ignore it. If only it were that easy! People who do not experience this chronic condition have no idea what it is like to not be able to escape the constant 24/7 noise in our heads.
They are sympathetic — there’s no doubt about that — but they just can’t imagine how stressful and debilitating it can be. This is one reason I decided to start a local support group. I desperately needed to interact with people who understood how difficult life is with tinnitus. Just ignore it? Not possible.
Not being able to ignore the loud noises in their heads brought 35 people from southern Arizona to the inaugural meeting of the Tucson Arizona Tinnitus Support Group (TATS) in February 2020. Almost everyone commented on how grateful they felt to finally find a group of people who were in the same boat, who could completely understand what they were experiencing, who could relate to how difficult life often is with this condition, and who understood how much life changes when tinnitus arrives.
People who share distressing conditions such as tinnitus and hyperacusis — conditions that are generally not understood by people who do not experience them — can bond almost immediately. I have bonded with people I had only emailed and who I had not even met yet! Feeling understood by others who also are learning to deal with an unalterable condition goes a long way toward helping us cope. Sharing information and experiences also contributes to the search for well-being.
Although almost everyone in the group had tried many unproven methods that did not help, we unanimously decided that the two best avenues for relief were distraction and masking. None of us have been able to successfully habituate yet. We all agreed that the three worst triggers of spikes, as most of you have discovered on your own, were loud noises, ototoxic drugs, and stress.
Many of the participants relayed their frustrations about the fact that nobody in their lives could relate to what they were feeling. One woman, who had survived Stage 4 cancer (her doctors called her a miracle patient), developed tinnitus after chemotherapy (not surprisingly). She said she beat cancer and was “rewarded with this?” Her friends constantly asked her to go to movies because they thought getting out of the house would lift her spirits. When she said she could no longer go to movie theaters because of the loudness, everyone in the support group nodded. All of us had also given up going to the movies, because even with earplugs, the noise is overwhelming. She shared with me after the meeting that she was elated to find people she could relate to and that it was definitely going to help her cope.
Several participants offered tips on what helped them, including meditation, hot baths, constant background sound, sound machines (including white-noise machines), hearing aids with maskers, ear muffs when vacuuming and using a blender, dramatically cutting down on salt and sugar intake, trying to stay calm and not get angry, and, unfortunately, giving up alcohol! We all moaned and said, “Oh, yes…”
Most of us have heard the concept of not fighting the noise but accepting it. The theory is that if you can remove the fear and anxiety brought on by tinnitus and can relax about it, your brain will eventually realize that it is not a “real” danger and eventually tune it out as an unimportant and uninteresting noise, like a fan or refrigerator running in the background.
One man said, “I read that you should make the noise your friend. Well, when I wake up in the middle of the night with loud screaming going on in my head, that is no friend of mine!”
Very few people in the group were able to not pay attention to the noise and just go on with their lives. Everyone admitted, though, that when they got distracted or in times of deep concentration, they didn’t notice the noise. Every person there agreed that focusing on the tinnitus always made it worse.
A number of people with tinnitus feel isolated and alone. As with other challenges, we might feel that we are the only ones suffering to this degree. In addition, some people with hearing loss and hyperacusis might be reluctant to go places where people congregate.
Participating in a support group where you can meet and interact with other people who are trying to cope can help in many ways. The camaraderie and comfort you can get from others who understand can ease anxiety and a sense of isolation.
You can pick up tips from people who found relief from something they tried.
Sharing ideas that have been effective for you, which could help and inspire other people, is a good feeling and can help you cope, because you know you are contributing to others’ well-being.
Sharing your struggles and emotional distress with a group that understands because they live with the same condition can be beneficial, because it’s an authentic connection. The compassion is sincere. It’s a safe space to open up. For some people, it might be the first time they’ve talked openly about tinnitus or hyperacusis, because talking about the “sounds in your head” with someone who doesn’t get that can be embarrassing and deflating.
If there is no support group in your area, why don’t you start one? The process of creating a support group has helped me cope immensely because of the distraction, my improved mood from feeling good about myself, and the new friends I have made very quickly. Staff at the American Tinnitus Association can provide you with helpful tips and information, including a comprehensive support group manual. You would be making a difference in your life and the lives of many others!
To learn more about starting a support group, email firstname.lastname@example.org, or call the ATA at 800.634.8978. The ATA supplies a one-time starter kit of materials for new groups, a manual on how to start and sustain a group, and email and website-listing services on upcoming meetings.