Living with tinnitus can feel deeply disempowering, and this has become even worse during the pandemic.
Here are just a few experiences which may be familiar, especially if you navigate the UK healthcare system:
- We’re increasingly being diagnosed by telephone appointment, without GPs even examining our ears for wax or infection.
- We’re being refused referrals to ENT because “they won’t tell you any different” or “your tinnitus will go eventually”.
- We can no longer get ear wax removed at GP practices and have to pay £50/60 privately to try and improve our tinnitus.
- We get told by ENT consultants there is nothing they can do, and we have to “learn to live with it”.
- We try and explain to friends, family, and colleagues what it’s like to have crickets or roaring in our heads and they either look at us blankly or say “oh I have tinnitus too, you’ve just got to ignore it”
With everyday experiences like this, it can feel like it’s not just the sound in our head but our entire tinnitus life that is out of our control. I’m here to tell you that’s not the case.
Tinnitus Tribe, today is the perfect day to start reclaiming your power over your life and your tinnitus. Here are some suggestions how:
There is a lot of information about tinnitus out there, not all of it accurate, or with the best interests of us in mind. As well as this newsletter (of course!) the American Tinnitus Association and British Tinnitus Association are great sources of trustworthy information.
Tinnitus Week (7th-13th February 2022) is the perfect time to educate others about tinnitus as they may already be curious, having seen coverage on TV or social media.
You could share this short film from the BTA with friends, family and colleagues or share the sound nearest to yours from the ATA’s library of tinnitus sounds (you might want to check your volume level before you play these).
If you’re comfortable speaking about your personal experience you could ask if there are opportunities to speak about tinnitus and how it affects you at your college, church, workplace or local community gatherings.
Although I manage my tinnitus well with mindfulness, there is no question that I would be in the queue for a cure if one were found!
Research is key to understanding more about the causes and mechanisms of tinnitus, and therefore what cures might prove possible for the millions of us living with the condition. But we are one of many conditions asking for research money, and we need to make sure those in power hear our voice!
Contact your elected representative and ask for more funding to be made available for tinnitus. Use this link to find your representative in the US https://ziplook.house.gov/htbin/findrep_house and in the UK https://www.theyworkforyou.com/mp/
Advocate for yourself
Self-advocacy involves helping friends, family and colleagues to understand what you need to be a happy and healthy human, parent, friend, partner and employee, who happens to have tinnitus. While many of us might have tried to explain this at the start, or may try and raise it from time to time, a key element of self-advocacy is being consistent in what you say, and the support you request. It can sometimes feel like you’re repeating the same requests over and over in order to get your needs met, but it will sink in eventually. I’m going to talk about this more in the next article as it is such a powerful tool for those of us in the Tinnitus Tribe. But if you feel able and happy to articulate what helps you manage your tinnitus better, then jump right in.
Which of these ideas are you going to pick to raise awareness of life as a member of the Tinnitus Tribe this week? Let me know!