tinnitus
h ear i n g health foundation
Tinnitus Care
2.0
“Don’t look online.” This is often a warning from healthcare professionals. The premise is that the internet is a dangerous place full of doom and misinformation, potentially making you feel more worried and alarmed. Still, people often seek help online because they may have nowhere else to turn. They may lack a community that understands their problem. This is particularly true for people struggling with tinnitus, or the experience of hearing ringing or buzzing without an external sound source. There is no cure for tinnitus, and current treatment options offer, at best, management of the condition. At Tinnitus Hub, a U.K.-based nonprofit with a global reach that is led by volunteers who all have tinnitus, we believe in the power of online communities to connect with others and provide support. More than that, we believe that online communities can be influential players with the power to change the future of tinnitus research and care.
The Struggle to Cope
If you visit your general practitioner, audiologist, or ENT (ear, nose, and throat specialist) for help with your tinnitus, they are likely to utter some variation of “you’ll need to learn to live with it.” That is easier for some than for others. In a 2020 online survey we conducted, we found
Tinnitus research is a small field. According to a 2019 analysis, other neurological conditions such as depression and anxiety receive more funding and attention.
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hearing health
hhf.org
Tinnitus patients find support online while providing valuable data for future research. By Hazel Goedhart and Markku Vesala
that 30 percent of people seeking help on the internet for their tinnitus have had tinnitus-related suicidal thoughts. This is a scary statistic, telling us that “learning to live with it” can mean a few months until habituation for some—yet seem like a near-impossible task for others. Those who are struggling with their tinnitus deserve more effective treatments than currently available. In the absence of that, counseling can help to cope, but inevitably many will seek solace online, where they may encounter shady scams, unstructured social media groups, and overpriced “cures.” Recognized tinnitus associations can offer resources, but may not have a community aspect. This is where Tinnitus Talk comes in, the community arm of Tinnitus Hub. Tinnitus Talk is the largest online tinnitus support forum, with over 32,000 registered members around the world and millions of annual unique visitors. Having managed the forum since 2011, we truly believe it fulfills a key role by offering peer-to-peer support for tinnitus sufferers. After a sophisticated language analysis of a random sample of nearly 3,000 posts in the Tinnitus Talk Support Forum over four months (late 2019 to early 2020), a computer science graduate student found that the vast majority of discussions have a neutral or positive sentiment. People may vent their frustrations, but they also lift one another up.
