Welcome back to the Oto blogs. We have touched on the stigma of tinnitus and the lack of awareness surrounding it. In this week’s blog, I interview Lulu, a person who has been living with tinnitus for over 20 years, learning more about how tinnitus affects her life. Lulu was first diagnosed with tinnitus 23 years ago, a month after the birth of her second child. For the sake of anonymity, Lulu is an alias, but all of her answers are raw and honest. We hope that through this interview, you will be reassured that you are not alone in your experience of tinnitus.
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 all my ear problems 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!
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 reasons for the onset of tinnitus and he had to proceed with the elimination method. I was sent for a brain MRI 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.
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. I guess eventually your body makes changes to accept it but it requires great mental capacity to first overcome and accept it. It took me a long time and a steely willpower to accept my tinnitus and to come to terms with the fact that I had no choice but to continue living with it. Sadly, while this was my journey, I do not believe others with tinnitus should have to go through what I did alone.
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. Over time, these interactions have made me turn down many social invitations which has thus led many friends to stop inviting me to events. So, really, my social life suffered a great deal and I have become more of an introvert than I would have liked. 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!
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.
I would encourage every person with tinnitus to openly share their condition with others with who they are interacting with. People are generally nice and they will make that extra effort to keep you in the conversation. 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! 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!
Yes, I do believe it can! I have to be honest, as I have become habituated with my tinnitus now, I rarely think about it, so I don’t need to use the app regularly. I have recently tried a few of the sessions and think they’re brilliant. I know the NHS has long waiting lists for CBT sessions. Oto offers a variety of therapies from cognitive behavioural therapy (CBT), targeted mindfulness, relaxation therapy and education, all easily accessible from an app. It also has specially curated masks that you can use to help relax, sleep, or just provide some respite from your tinnitus. I think Oto is building more than tinnitus therapies but also a community that will help everyone in their tinnitus journey to receive the support they need.