Do you ever feel isolated or alone because of your tinnitus? Or that there is no end in sight? Living with tinnitus can often feel like an uphill struggle and it is very common to feel this way.
Here is the inspiring story of someone who has been living with tinnitus for over 20 years and how she has come to habituate. For the sake of anonymity, Lulu is an alias, but all of her answers are raw and honest. We hope that this will help to reassure you that you are not alone in your experience of tinnitus.
How long have you been living with tinnitus?
I have been living with tinnitus for over 23 years!
How did your tinnitus start?
I still remember that fateful night.
I was feeding my month-old baby boy while trying to get the attention of my 1-year-old daughter, who was staring at the TV screen up close. At one point, I screamed quite sharply to get her attention and that is when things started going wrong. Something happened.
I had a sharp piercing pain shoot in my ear followed by dizziness and then the whistling sound set in. I was kind of worried but shrugged it off as I was confident it would go away after a good night's sleep.
To my frustration, the situation had not improved by morning.
Instead, the whistling sound became a nuisance. I was perturbed by this constant noise and just wanted it to stop and go away.
Although my hearing was not affected at that time, I felt agitated, like how you would feel if a pesky fly is buzzing around you continuously and refusing to be scared away!
What help did you get at first?
I went to the ENT first thing in the morning after the onset of the whistling sound. He ran a number of hearing tests and concluded my hearing was fine.
He suspected tinnitus but referred me to a neurologist for further consultation and tests. According to the neurologist, there were several possible causes of tinnitus and he had to proceed with some further investigations. I was sent for an MRI scan to rule out a tumour near my inner ear region and then a few other tests to ascertain the health of my inner ear and nerve.
All the tests came back negative. He could not explain the onset of my tinnitus; my screaming could have been a possible cause. Neither could he offer any remedy for my situation except tell me that I was stuck with it for life.
Whilst I appreciate all the tests the multiple doctors ran, I did not get the help I desperately wanted at the time. I was merely told tinnitus would be something I would need to learn to live with.
How has tinnitus impacted your life?
Being a non-working mum, my tinnitus affects mainly my social interactions on a daily basis.
Even a simple errand to the grocery store or talking to the gardener requires a change in the way I would interact with them.
I have to physically position myself such that they are facing my good ear so that I can catch every word they say. In other social situations, like parties or big gatherings, this physical positioning is not always possible and I often end up trying to read people's lips. When that fails, I just pretend I understand the conversation and laugh when they laugh and look serious when everyone else looks serious.
Sadly, my methods do not always work. Many times I miss hearing the conversation and people around me expect a response from me. I just end up smiling at them, looking sheepish. Moments like this really affect my self-confidence and make me want to run far away from social gatherings.
I never had the courage in the early days to openly tell my friends or people I interacted with that I had tinnitus.
With the stigma surrounding tinnitus, I felt ashamed for anyone to find out about it.
With time, I am becoming more confident in talking about my tinnitus and asking people to repeat themselves or speak louder in social situations. Surprisingly, people are very understanding!
How did you habituate to tinnitus?
There was no method or process at all. How does one come to terms with this constant whistling sound?
The doctor said I had to live with this sound for the rest of my life and for me to try to mentally overcome and accept this.
This was hard, really hard.
I did not get any help or support from the doctor nor was I directed to any support group.
I was back at home, a young mother of 2 kids struggling with tinnitus and thinking that I was the only one in the world who was suffering from this.
At times, my busy days tending to my young children would distract me from my tinnitus but it was when I was alone, by myself, that the tinnitus would become more pronounced, and I would feel so depressed wondering how I could live my life with this 'thing' inside my ear.
However, things started to improve when my body began to accept the sound.
It required great mental capacity to first overcome and accept it, but I made slow progress. It took me a long time and a steely willpower to come to learn how to live with tinnitus. I accepted it and came to terms with the fact that I had no choice but to continue living with it.
Whilst this was my journey, I do not believe others with tinnitus should have to go through what I did alone.
How have your views on tinnitus changed?
Fast forward 23 years and I now not only suffer from tinnitus but also from hearing loss in the same ear. I have been declared almost deaf in that ear by the GP.
I have to thank my husband and my children for their support and encouragement to get me to openly talk about my tinnitus and let the people I interact with know about my tinnitus. I am no longer ashamed to introduce myself to people and add in the statement "By the way, I suffer from tinnitus so could you speak louder or could you stand on my right side so I can hear you better".
I realise most people are empathetic and compassionate and they do try to accommodate me so I can partake in their conversations. Sometimes they forget halfway through the conversation and I have to remind them again but, I find, that is fine with them and they don’t mind.
What I have learned on my tinnitus journey is that I am not alone.
Tinnitus is "unseen" and for people to know about it and adapt to my needs, I have to make the first move to tell them about it.
It took me almost 11 years with tinnitus to come out of my box and find my voice and strength in dealing with this publicly. Maybe if I had known I was not alone, if I had known that there were support groups out there, I could have joined and I might have had a more productive and fuller social life.
Do you have any tips for living with tinnitus?
1. Find a therapy that works for you
There are so many options out there that just weren't available when I was diagnosed. Tinnitus CBT in particular is becoming more accessible.
2. Talk about it
I would encourage every person with tinnitus to openly share their condition with others with who they are interacting with. People are a lot understanding than you may think and they will make that extra effort to support you.
The British Tinnitus Association has a confidential helpline you can call during working hours.
3. Join a support group
If you are not ready to let the world know about your tinnitus, take baby steps and join a support group. It will give you the courage and encouragement you need to face the world. I wish I did!
There are a number of Online Support Groups organised by the British Tinnitus Association.
4. Check your hearing regularly
Having tinnitus does not always mean resultant hearing loss but hearing is affected so do make sure you get your hearing checked regularly too. This is very important as well!
How can Oto help you live with tinnitus?
I believe it can be very helpful.
I have become habituated with my tinnitus now so I don’t need to use the app every day, but I wish something like this had been available when I was first diagnosed. I have gone through the therapy sessions and I think they’re brilliant, I find the mindfulness training really useful. I also know the NHS has long waiting lists for CBT sessions.
I like how Oto is building more than just a tinnitus therapy app, but also a community that will help everyone in their tinnitus journey to receive the support they need.