‘I feel very alone and miserable:’ People suffering from tinnitus say more support is needed

Grace Chow, 76, spent most of her life being very active. The Toronto resident was an avid bicyclist and passionate about playing ping pong with friends but six years ago, that all changed.

“I just had to stop because this condition is draining me in so many ways.”

Chow has a severe form of tinnitus, while most of us hear silence when alone in a quiet room, Chow hears roaring and hissing in her head.

“For me it’s 24/7,” she said. “I just feel like I’m in constant discomfort and agony.”

Tinnitus is caused by various underlying conditions and won’t go away until the main issue causing it is treated.

“I have been diagnosed as having Eustachian tube disorder in both my ears, which they believe lead to the tinnitus.”

Chow has tried for years to treat the underlying condition in hopes of ending or at least diminishing the sounds in her head, but after countless visits to doctors and specialist has been unsuccessful.

“Because of that, I have been told this is just something I have to learn to live with and I am trying to cope but it’s very, very difficult.”

She has sought out various ways to help her manage tinnitus, from seeking psychotherapy, taking prescribed antidepressants to wearing special hearing aids equipped with Bluetooth technology.

“Even now, as I am speaking to you, I have to play soothing music in my aids because otherwise I would not be able to make it through this interview,” she told us. “It’s just a constant battle of learning to live with this — and it’s depressing.”

Mitra Mehra, Doctor of Audiology’ Au.D Reg. CASLPO (College of Audiologists and Speech-Language Pathologists of Ontario) with Hearing Excellence, a Toronto-based clinic, said the mental anguish people like Chow go through can be very difficult.

“There’s a lot of anxiety,” she said.

Mehra has treated countless people suffering from tinnitus but again, curing it can be tricky.

“I would say that curing tinnitus is like curing a headache, because it is a symptom, and it depends on the cause which must first be diagnosed and dealt with,” she said. “If it’s an underlying issue where the damage is permanent, then you have to try and manage it.”

Mehra said she’s seen success in people who’ve sought out cognitive behavioural therapy, made diet changes and relaxation exercises. But she doesn’t discount the fact that living with tinnitus is far from easy.

“So at the very least, it’s helpful for people to talk about it to someone who understands what they’re going through.”

“I just feel like I’m in constant discomfort and agony.”

Chow wants to do that but said there is a lack of support networks in Canada to help her.

“It would be helpful if I could at least talk to other people who have my problem,” she told CityNews. “People who have tinnitus can really relate to me. They know what it’s like.”

Chow said friends and family try to comfort her but that support has limits.

“They don’t truly understand because they’re not hearing what I am. This constant roaring and buzzing all day long. I feel very alone.”

Chow is speaking out as her efforts to find organized support groups, of others sharing her pain, has been unsuccessful.

“There is nothing here,” she said. “So, I am hoping by sharing my story, we can organize something.”

She points to the U.S., which has the American Tinnitus Association, a not-for-profit organization that works to fund research for tinnitus treatments and helps connect others who are suffering.

In Canada efforts to create a similar initiative have failed.

“The closest thing we had in Canada was the Canadian Hearing Society. They would give weekly sessions on tinnitus and go through treatment options but it wasn’t continued,” Mehra told CityNews. “There is definitely a need for a support network here and perhaps if people could pool their resources we could perhaps create a Canadian Association for Tinnitus.”

Mehra said while such a group would help connect others who are suffering; it could also create a strong collective voice to help get treatments being used in other countries brought here to Canada.

“They’re trying to get approvals here in Canada. If you had an organization that knows about these things, they would organize efforts to make those things happen faster. That would really be a great help for those people out there suffering from tinnitus.”

Chow is hoping to start small. She’s considering starting a group on social media in hopes to connect with others in the GTA.

“I would even host meetups, have coffee just so I can have the chance to talk to someone else going through this,” she said. “It won’t cure my tinnitus but I wouldn’t feel so alone and isolated.”

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