People’s experience of acquiring tinnitus is usually:
1) Experience T for the first time, or have it step up a gear from very occasional
2) See GP or audiologist for advice/help
3) Seek further, detailed information
4) Either habituate successfully over months/years with no further input, OR become more distressed by the T signal, increasing the intensity of it and furthering the distress
Step 2 is known to be a minefield, as at this point you can receive the dreaded “nothing you can do about it”. Or worse, at ENT, “I don’t know why people get sent to me, I can’t help you”. We’re working on changing this so that everyone gets good quality help or signposting to helpful resources.
Step 3 is really important. If you get poor quality information or myths, it can actively make the T worse. If you’ve read about tinnitus being associated with hearing loss (or something more sinister), it lodges in the subconscious. Now every time the T signal pops up, you’re remembering that bad information. You make a connection, and it stays with you: notice tinnitus and feel bad (angry, fearful, sad).
If you go on one of the forums that’s known for its gloomy outlook and difficult members, a person can start “doomscrolling”. If you remember the COVID lockdown period, many of us were doomscrolling every day. The news was bleak, we saw nothing but tallies of deaths. We got constant news updates and it was relentless. Some of us acquired anxiety and depression. You didn’t want to hear the bad news, but you kept on listening. Those of us with tinnitus found that it got worse in lockdown. Stress was, and is, a trigger.
These actions (forums, ruminating, worrying, examining your tinnitus), if we get poor information, keep us thinking about T in a negative way. These thoughts reinforce your bad feelings, and it’s emotion that keeps “feeding” the T, so you hear it more often and for longer than you would if you’d had good information and neutral thoughts.
This is why good information is invaluable. If the first thing you heard from your GP was:
“Tinnitus has no cure as such, but people successfully get used to it over time. It might take you some time and you may not be able to picture it right now, but 1 in 10 of us have tinnitus and it’s really only noticeable when you’re poorly or stressed. Here’s some info that answers all your questions, come back to me if you’re still struggling to distract yourself in 3 months and I’ll send you for Cognitive Behavioural Therapy or Mindfulness Training to help you adapt”.
It may sound flippant. Like the speaker hasn’t understood that *your* T is so much worse than that. But, crucially, it really is true that you *can* and *will* habituate. Even if you’ve been trapped in that cycle of emotion and prominent T for months or years. You can get to a place where the T is no worse than a mild, occasional ache in your knee, rather than a leg amputation. There, but not something that controls your life or thoughts. Part of you, not something external.
If you’re currently at Step 3, make sure you get good quality information. Realistic, informed, sympathetic but not reinforcing negative outlooks or myths such as “you have to give up chocolate, alcohol and coffee” (you don’t!).
Once you have a balanced view, you can hear the T signal, have no reaction to it, and go about your day. It is much easier to live with tinnitus if you’re not having a reaction to it. Easier to adapt to it if you’re not having lingering doubts that you will ever be OK. This blog is a balanced source of information, so is Tinnitus UK and their online presentation. My Active Habituation course is all the information you need, tailored to you.
Get good information, then move on with your life. You have tinnitus, but you can and will be able to cope with it. Once you understand it, it will have no power to distress you.
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