Many people say they benefit from being in touch with other people with tinnitus. Tinnitus can be an isolating and lonely condition – by getting in touch with other people with tinnitus, it can be made less so. The BTA recognise this and we facilitate a number of ways people with tinnitus, their families and friends, can gain mutual support in addition to the help and advice available from the BTA and medical professionals.
Tinnitus support groups
Local tinnitus support groups regularly help thousands of people. For those experiencing the fear and anxiety that often accompany the early days and months of tinnitus, the support group can be a lifeline. That anxiety can sometimes have been made worse by unhelpful advice from friends, family or even some medical professionals who are not specialists in this field.
Here is a selection of comments made by people attending different groups throughout the UK:
You realise that you are not isolated, this makes you feel less alone.
It’s great to share ideas on how to live well with tinnitus.
I walked in there that night defeated by tinnitus, and I left knowing it was nowhere near as debilitating as I had thought, and that it can be lived with.
It makes you focus on the condition and you realise how well you are dealing with it.
Empathy; unless you suffer you do not have any perception of what it is like, doctors do not always understand tinnitus.
After attending group meetings or speaking to our groups contact on the phone, I feel more confident about my condition.
I find the group sessions very useful. It is good to share experiences, thoughts and feelings. I feel encouraged and I actively try to deal with the feelings that my tinnitus brings. I try to incorporate the advice from the therapists and the suggestions from other group members.
To find your nearest tinnitus support group, you can find the most up-to-date details on our website here or by calling our helpline on 0800 018 0527 or emailing [email protected]. If there isn’t a group in your local area, we will take your details and explore the feasibility of supporting the setting up of a new group.
The BTA forum
www.healthunlocked.com/bta
The BTA forum is an online discussion site where people can hold conversations in the form of posted messages. It differs from online chat in that the messages are archived and remain on the site. This means that messages are searchable, so you can see if someone has already asked your question, for example, or has mentioned a particular topic.
Our forum contains many posts, often tagged with a particular topic. Within a forum’s topic, each new discussion started is called a thread, and can be replied to by as many people as so wish. A sense of virtual community has developed within our forum, thanks to the regular users.
Our forum is moderated – that is, there is someone checking all the messages to ensure they meet the House Rules, that the space is free from spam (advertising) and that it is a polite, constructive place for discussion. The moderator ensures that posts comply with the rules and that everyone is supportive of each other. The moderator can warn or ban members who behave inappropriately if necessary, but that very rarely needs to happen. The moderator often points forum users in the direction of relevant BTA resources, such as information leaflets on a particular topic. However, we are unable to answer specific medical questions.
Users have to register with the forum (the instructions are on the forum) and can then log in to post or read messages. Any registered person can post, read, or comment on messages.
Forums have a special set of jargon associated with them; for example, a single conversation is called a “thread”. If you want to check any definitions, the Wikipedia page on Internet forums is a good place to start.
There are other forums related to tinnitus available. Two of the most popular are run by Tinnitus Talk and Action on Hearing Loss.
www.facebook.com/britishtinnitusassociation
Facebook is a social networking service and website. Users must register before using the site, after which they may create a personal profile, add other users as friends, and exchange messages, including automatic notifications when they update their profile.
We have a “Groups” page which people may “like” and if they click on “show in newsfeed”, they can see posts from us automatically. Otherwise, people click on our page to visit from time to time.
Posts are made by the BTA but any user of Facebook may like or comment on them, or share them to their own feeds. We use Facebook mainly for publicising our work, but occasionally for sparking discussion. People can send messages to the BTA through Facebook by commenting on a post but again, we are unable to answer specific medical questions.
Posts can be images, sounds, video, links to websites – not just text.
www.twitter.com/britishtinnitus
Twitter is an online social networking service and micro-blogging (very brief journalling) service that enables its users to send and read text-based posts of up to 280 characters, known as “tweets”.
Unregistered users can read the tweets, while registered users can post tweets through the website interface, SMS (text message), or a range of apps for mobile devices.
Users can group posts together by topic or type by use of hashtags (words or phrases prefixed with a “#” sign). Similarly, the “@” sign followed by a user name is used for mentioning or replying to other users. To repost a message from another Twitter user, and share it with one’s own followers, the retweet function is symbolised by “RT” in the message.
Whilst most posts on our feed are made by the BTA, we do retweet other’s tweets (and they retweet ours). We try to reply to every comment and question although we are unable to answer specific medical questions.
Other sources of support
The BTA can offer help and advice to people with tinnitus, their family and friends. Our friendly and experienced team can offer support via our freephone helpline 0800 018 0527 or [email protected]
Quiet
Members of the BTA receive a quarterly journal called Quiet. Many members say that they gain a lot of benefit from reading about other people’s experiences in the magazine. If you would like to join the BTA, do contact us on 0800 018 0527 or you can join online.
Support from the BTA or from other people with tinnitus is not a substitute for medical advice. Details of how to access tinnitus services are available in our leaflet Tinnitus Services.
For further information:
The BTA Tinnitus Support Team can answer your questions on any tinnitus related topics:
Telephone: 0800 018 0527
Web chat: – click on the icon
Email: [email protected]
Text/SMS: 07537 416841
We also offer a free tinnitus e-learning programme, Take on Tinnitus.
Download this information:
Sources of mutual support
Sources of mutual support LARGE PRINT
Author: Nic Wray
Version: 2.0
Updated: July 2019
To be reviewed: July 2022
Page updated 22 March 2022
