How Living With Tinnitus Can Impact So Badly Your Life
The invisible condition that has so much power over me
I’ve been living with Tinnitus for 5 years and, since the day I got it, my life changed completely. For the worse.
If you’re not familiar with this condition, the British Association of Tinnitus defines it as:
The perception of noises in the head and/or ear which have no external source. (…) those living with the condition may have to endure ringing, buzzing, hissing, whistling or other noise.
In my case, it’s a constant ringing in the brain. When it gets severe, I also hear it piercing out of my ears. It’s weird, I know.
The first 18 months after I “got it” (I honestly don’t know a better way to say it), was the worst time of my life. The ringing was so loud that I couldn’t sleep — I even got sleep paralysis, due to sleep deprivation.
I became a hostage in my own home; I couldn’t endure the noises outside. The pedestrian traffic lights sound and the ambulance/firefighters’ blue lights were my worse nightmare. Children screaming, cars honking, dogs barking, and people whistling were also things I had to protect myself from. I still do, but now the consequences are not as bad as before.
Tinnitus also killed my social life. I barely saw my friends and my son, that lived close to me. He visited much less, at my request. I couldn’t stand people’s voices, not even my own. My environment had to be completely controlled by me.
My ability to focus was also affected. This affected me when I wanted to read a book (something I love to do) or any other activity that involved me using my brain. Often, a simple conversation was a struggle. Some days, if you’d asked me how much was 2+2 I couldn’t tell you.
My brain wouldn’t function; there was only noise.
Because of tinnitus, I had to resign from my job. Not only it was a stressful one (management) but I worked in a loud environment. I had to start over, but without a clue where to turn to. Everything was so loud and disturbing.
Fast forwarding to the present, I wish I could tell you that tinnitus gave me a truce. I can’t. I still suffer from it, as most people who have chronic tinnitus do. There’s no cure or treatment for it and despite ongoing research, there’s no good news in sight.
Those who have tinnitus must learn how to live with it. There’s no other way to survive this madness.
You must learn your triggers. The most common are loud noises and stress — protect yourself and manage them the best way you can.
You can only manage tinnitus in one way: with distracting techniques.
You need to keep your brain distracted from the noise inside it. The best way to do this? With noise. Silence is the worse enemy for us, the tinnitus gang.
But it can’t be any kind of noise. No! I can’t handle high-pitched voices (which makes it harder to choose audiobooks) or certain musical instruments, like the violin or piano. White noise is good, but what works wonders for me is storm sounds — it sends the ringing to the back of my head and it’s super relaxing.
How Tinnitus affects my professional life
As be to expected, tinnitus had a great impact not only personally but also professionally.
I wasn’t fulfilled in my old job, but I enjoyed it. And it paid the bills, which is what we need the most, right? Because of tinnitus, I had to go off sick from work for months. When the audiologist informed me that there was no cure or treatment and that the most probable scenario would be for me to live with tinnitus forever, I resigned and, when ready to go back to the outside world, I got a non-qualified job. Which wasn’t a problem per se, but I studied a lot; I had goals for my career. Those were now killed by tinnitus.
In time, I got control of the ringing in my brain. Not that it disappeared, far from it. But I learned how to live with it. I stopped living for it.
But learning to live with tinnitus doesn’t mean your life is easy. It’s not. It just means you learned how to cope with it. And, if you’re like me, you learned how to keep it a secret. You become a master of disguise, of pretending that everything is alright when, in fact, your brain is exploding with a terrible noise and your hearing is compromised.
I have perfect hearing. Except that I don’t.
One of the causes of tinnitus is hearing loss. I’ve done tests several times and my hearing is perfect. Except when it’s not.
When the ringing inside my brain is stupidly loud, it affects my ability to hear properly. This means that talking on the phone is a struggle, and I have to ask, several times, for people to repeat what they said.
Luckily, this doesn’t happen often anymore, but when it does, it’s particularly hard for me.
You see, I work with victims/survivors of domestic abuse and my intervention happens mainly when they are in crisis — just after a serious incident, or when they are fleeing, for example. My clients are at the peak of a traumatic experience; they don’t need their allocated IDVA (Independent Domestic Violence Advocate) to keep saying, “can you repeat that, please?”
I have strategies to cope with my deafening brain, like using headphones on the phone (the sound goes to both ears, which helps). Still, I feel terrible for wanting to listen to my clients clearly and their conversation with me is contaminated with a stupid ringing.
So, I have perfect hearing, except that I struggle to hear the external sounds because my brain is so fucking loud!
Hyperacusis
I’m one of the lucky tinnitus sufferers that have moderate hyperacusis and not acute. Hyperacusis is a hearing disorder where you are super-sensitive to noises. This, of course, makes it very hard to cope with everyday sounds.
Despite my colleagues knowing that I have tinnitus (impossible to hide it during fire alarm drills — another nightmare!), people who don’t have it don’t quite understand how it affects you, sometimes so intensively.
It’s hard to keep asking my colleague to stop whistling, to ask people in the cafeteria to stop clinking their cutlery or to lower their voices.
The same way is rude to ask my colleague with a high-pitched voice to speak lower on the phone or not to talk at all. I say I’m sorry in my head many times. But her voice truly triggers my tinnitus.
Mental Exhaustion
It’s impossible not to get exhausted by a loud brain, that rings day and night. My sleep quality is highly affected.
I have days I’m so exhausted that my brain takes ages to process information and refuses to focus. It’s so frustrating! I’m better now, being less demanding with myself; I try to respect my body’s rhythm. Still, it can get really hard; especially due to the nature of my job, where often things need to happen fast.
It can be so, so hard to manage a working day when your brain is screaming at you! And nothing you do will shut it up.
When my tinnitus is super loud, I know it will take me, on average, 3 days for it to settle again. Just settle, not disappear. Until then, Until then, I have to navigate through it.
Apart from when I first got tinnitus, I never took a sick day because of it. Not that I didn’t need it, but because I can’t allow it to affect my life even more than it already does.
If I take days off work because of tinnitus, it would make me angry and stressed and feeling that way only triggers it, so… you see the dilemma?
Living with tinnitus is horribly hard. It impacts every bit of your life but, mainly, it has a terrible effect on your professional life.
I chose to hide it the best I can, sometimes at the cost of my mental health. I feel drained, exhausted and unhappy. But the alternative wouldn’t be much better.
There aren’t many jobs where the noise is kept to a minimum, and the stress is inexistent or very low. Let’s put it like this: there aren’t many jobs that are tinnitus-friendly, mainly because there’s nothing that makes it better than yourself.
I love my job and I will do everything to be the best professional I can be, with this incredibly noisy brain. And like me, I believe that everybody that has a noisy brain, just tries to live one day at a time, trying not to go mental with the noise.
We are warriors.
