What’s it like to have a long-term condition where there’s no cure, and no guaranteed medical treatment to alleviate it?
If you have tinnitus, you’ll know.
You might describe your experience as frustrating, exhausting, distressing, hopeless, excruciating, unbearable and unmanageable.
Those are certainly some of the words I used.
I acquired tinnitus overnight when I lost my hearing in one ear. Although my tinnitus was linked to my hearing loss there was no obvious reason why my hearing had failed in the space of just a few hours. And that ‘not knowing’ was very hard to live with.
Blame and shame
Nothing happens without a reason, right? So I figured that if the doctors could find no obvious medical reason for my hearing loss and tinnitus it must be down to something I had or hadn’t done. I got lost in my past, thinking back to all the gigs, clubs and festivals I’d gone to and wondering whether they were the reason I was now experiencing this noise all the time. And with that came a sense of shame – of how I now had to live a different life to friends of my age.
Embarrassment
And oh boy, did I feel embarrassed. I was in my early 30s when tinnitus made its home in my head. Not really the age when you want to spend your nights curled up on the sofa knitting. I wanted to be out at pubs and clubs and gigs with my friends but knew it would do my tinnitus no favours. I really resented not being able to do what I wanted, without thinking of the consequences.
Explaining my tinnitus at work was another huge obstacle. How could I convince my manager that the reason I couldn’t concentrate was the constant noise in my head, and that I wasn’t tired through late night partying, but through being unable to sleep for all the pings and whirrs of my tinnitus.
Anger
My inability to articulate my experience to others in a way that helped them to understand left me frustrated and angry.
Angry that friends could treat what I was hearing as a joke “Are the voices still there, Lisa?”. Angry that people seemed to lack basic compassion for something they saw was clearly upsetting me (though I’m sure I’d struggle to ‘get it’ if I’d never had it). And angry at the world. Why me? Why this on top of other health challenges I already had. IT JUST WASN’T FAIR.
Worry
I can feel myself hyperventilating even just writing that paragraph. The feelings come back so clearly at the injustice I felt of being ‘robbed of a normal life’ as I saw it.
And what about the rest of my life? Would my tinnitus get worse? Would I be able to keep working? Would my friends stick around with this weird person who wore earplugs in pubs with loud music? Even if I was having a good day with my tinnitus I couldn’t relax. I alternated between excitement that the tinnitus might be going and fear of when it would be back to its normal annoying self.
The thoughts and feelings around my tinnitus and hearing loss became all-consuming, which had a dreadful impact on my quality of life.
I had been brought up to believe that whatever difficulty I was facing I had to put my head down and get on with it. So every time I felt all these emotions I tried to push them back down so I could carry on as if everything was absolutely fine. I thought I was doing a good job of managing it. But I wasn’t. Until I was made redundant…