Mental Health – My Hearing Loss Story

British Tinnitus Association Manifesto Roundtables 2020, kindly hosted by Sir John Hayes MP.

A discussion by Carly Sygrove, creator of the My Hearing Loss Story blog, and advocate for people with hearing loss and tinnitus.

Tinnitus affects one in eight people in the UK, yet there is currently no cure.

My own tinnitus story began three and a half years ago when I experienced sudden hearing loss in my left ear. The moment I lost my hearing, I simultaneously gained the unwelcome whooshing and ringing sounds of tinnitus.

Following my hearing loss, I started to write a blog in order to share my experience of living without full sound and with other associated issues, including tinnitus. Through my blog, I have connected with people from all over the world whose lives have been affected by hearing loss and related symptoms. Tinnitus is one of the most common reasons why people contact me to seek support. Living with such an intrusive, yet invisible condition can be extremely difficult, and for some it is debilitating.

Although there are management techniques and devices that can mask the noises of tinnitus, there is nothing that can actually eliminate it. Knowing you have a condition for which there is no cure can be a tremendous mental weight to bear.

Tinnitus Research: How Can We Move Forward to Find a Cure for Tinnitus?

As part of the preparations for Tinnitus Week (3rd-9th February 2020), I was invited by the British Tinnitus Association (BTA) to attend a roundtable event at the House of Commons.

I would be representing people with tinnitus and joining researchers, other people with tinnitus, politicians, public health institutions and research funders, to discuss how we can progress the search for a tinnitus cure.

The Roundtable Event – House of Commons, Thursday 16th January 2020

Tinnitus roundtable

The event consisted of guests at two parallel tables, discussing how to move forward with tinnitus research.

Bringing together participants from a wide spectrum of backgrounds and specialisms encouraged an active and productive discussion. There was a focus on both the technical aspects of developing a cure and the personal opinions of those who are living with the condition.

The Technical Aspects of Finding a Cure

Although the participants in the discussion at our table were from a variety of backgrounds and with different associations with tinnitus, we all agreed that a tinnitus cure means silence.

Listening to the views and priorities of those involved in research, I learnt so much about the technical challenges of finding a cure. There are a number of issues which can impede the progress of research, and

there are matters to be considered before progressing studies further. Some of the topics discussed are outlined below:

The Importance of Research Into the Subtyping of Tinnitus

There isn’t just one type of tinnitus, in fact, there are many different forms of the condition.

Tinnitus may occur as a consequence of excessive noise exposure or be caused by disorders which affect the brain’s auditory function. Some types are related to the sensory system and others are a result of muscle contractions. There are also subtypes of the condition such as musical and pulsatile tinnitus. More focus needs to be placed on further identification of tinnitus subtypes in order to facilitate more targeted research.

Co-founder of Tinnitus Rooms support group, Louise Hatch stated, “We need funding and research into subtypes of tinnitus – it needs serious attention in its own right.”

Difficulty Measuring the Effects of Tinnitus

Currently, there is no objective way to diagnose or measure the effects of tinnitus.

The effects of tinnitus are subjective and hence hard to measure. For some people, the symptoms of tinnitus may not affect their daily lives and others it can have a huge impact. This doesn’t necessarily mean however, that one patient’s tinnitus is more severe. Some people are able to manage tinnitus more successfully than others.

The severity of tinnitus for patients may also fluctuate due to other factors, such as tiredness, weather changes and mindset. Since the effects of tinnitus are hard to measure, it is difficult to compare results in studies and for this reason, efforts to make advancements towards finding a cure are hindered.

The Pursuit of Identifying Biomarkers for Tinnitus

At present, a biomarker for tinnitus has not yet been determined.

A tinnitus biomarker is a characteristic identified in blood or the body that provides a measurable indicator of the presence of the condition.

The presence of a biomarker would be physiological evidence that a patient has tinnitus. If researchers are able to understand the mechanism of tinnitus, then they will be able to measure changes or progression of the condition, and the effectiveness of treatments can be evaluated objectively.

The Need for a Tinnitus Database

Dr Charles Large (CEO, Autifony Therapeutics), highlighted the benefits of creating a national tinnitus database with regards to moving forward with research:

“Absence of a UK-wide register of tinnitus means patients are being missed. Research trials would be the first to benefit but more importantly, it would benefit the whole tinnitus community.”

The Nature of a Cure

It is not yet known what form a cure will take. Tinnitus researcher, Dr Will Sedley, explained that to find a cure, researchers need to understand every level of interaction between the brain and ear, with regards to the condition. They need to discover a way to teach the brain to distinguish between real sounds and tinnitus and to filter out the latter.

The cure could take the form of a pharmaceutical drug or perhaps a further-developed type of sound-based therapy. We just don’t know yet.

More Tinnitus Awareness Amongst the Medical Community

Dr Will Sedley stressed the need to make tinnitus a more attractive area of research to medical students. He stated that “This is one of the most unsolved medical problems”, yet he doesn’t remember tinnitus ever being mentioned in medical school, or any question referring to it in exams.

Where to Allocate Funding?

If the government provides more funding to tinnitus research, it will need to be decided where the money will be allocated.

Tinnitus is not an illness in itself but rather is a symptom of a pre-existing condition, such as hearing loss, stress, inner ear disorders or migraine. Since there are various potential causes of tinnitus, do we put money into restricted tinnitus research or use it to fund other groups of research with a focus on illnesses where tinnitus may occur as a consequence?

By funding other areas of research, there is a possibility that a cure for tinnitus could be found as a result of curing an underlying condition.

What People With Tinnitus Want to See

Before the event, I spoke to some of my blog contacts, and for an opinion, much closer to home, I also contacted my dad, whose life has recently become affected by tinnitus.

Detailed below are some of the hopes people who are living with tinnitus have for future research, which largely coincide with the opinions of those at the event, who work within the area of tinnitus support:

More Support From GPs

A large number of my contacts expressed a desire for more help from the medical community for people with the condition. Some, including my dad, had experienced discouraging consultations with their doctors and were simply told to “get used to it”. Many people hadn’t been offered advice or support on how to manage tinnitus nor had they been referred to sources of emotional support. Perhaps successful guidance from GPs begins with specific tinnitus-management training?

During the discussion, Megan Gill (Tinnitus Hub support forum representative) emphasised how “Patients want to be heard and have a voice in research.” She spoke about the desire patients have to be listened to, and to be part of the journey of rehabilitation and eventually a cure.

Tinnitus Awareness and the Effect on Mental Health

Megan stressed the need for more awareness of the potential impact of tinnitus on mental health.

According to a survey carried out by Tinnitus Hub, 64% of tinnitus patients reported that the condition had caused them mental health issues, with stress, anxiety and depression being the most prevalent.

On this theme, a large number of my contacts emphasised the importance of having the hope of a future cure.

Of course, whilst a cure does not currently exist, acceptance of the condition is key in moving forward and it is important for those affected to find a way of managing their symptoms to improve their quality of life. Yet, the reassurance that researchers are working to find a cure, can give those affected a level of mental comfort.

More awareness of the interrelation between tinnitus and mental health issues could have a positive effect on fundraising efforts and more researchers may be likely to embrace the challenge of finding a cure.

Prevention Measures

Speaking as a voice for musicians and DJs, Anne Savage highlighted the importance of promoting tinnitus prevention measures. As a Plug’em ambassador, Anne is passionate about reducing the stigma of wearing earplugs to protect hearing in environments with potentially dangerous volume levels such as gigs, festivals and clubs. In the discussion, it was suggested that perhaps there is a need for more strict decibel restrictions in the UK.

As a former teacher, I wonder whether this is something that needs to be addressed in schools, starting with a focus on volume levels in the classroom?

My Thoughts

Personally, I hope for more international interest in tinnitus research. I feel that this is a worldwide condition which needs a worldwide solution. I’d love to see collaboration between research institutions around the world where key focus areas of study are agreed.

Surely, creating strong communication links in the research community and sharing outcomes and discoveries, could help drive research forward with more dynamism and impact.

Moving Forward Towards “a World Where No One Suffers From Tinnitus”

To summarise, the main priorities from the discussion were as follows:

Create a UK tinnitus registry
Focus research on identifying biomarkers for tinnitus
Raise awareness of the effect of tinnitus on mental health
Promote prevention measures, e.g. more strict decibel restrictions in the UK

The British Tinnitus Association will combine the recommendations from both discussions and present them to government ministers in order to move forward the search for a tinnitus cure.

The Secretary of State for Health and Social Care, Matt Hancock, has already taken an interest in raising the profile of tinnitus research on the political agenda. “I am very happy to look specifically at the case for increased research funding into tinnitus and to work with [Sir John Hayes] on it,” he responded, following the roundtable event.

It was an honour to take part in such a lively and positive discussion. I feel that bringing this level of awareness to tinnitus is a very positive step towards finding a cure. And, for me, I have a little more hope that I will one day be able to enjoy silence again.

It has been just over three years since my sudden hearing loss, which left me profoundly deaf in my left ear. The months following this loss were spent hoping for some recovery. I was optimistic about the possibility of learning invaluable pieces of information from every specialist I met, and was hopeful concerning each new treatment or therapy I tried. Though, these months were also full of frustration, anger, sadness; difficult feelings that grasped at me with all their strength, making each day a duel to be fought. Now that three years have passed, and I am confidently dealing with the practical effects of hearing loss, I can look back at this experience with clarity and more understanding about the emotional impact this loss has had on my life,

During the time immediately subsequent to losing my hearing, I didn’t allow my grief to consume my attention. In truth, I don’t think I even realised I was grieving. Instead, practical issues dominated my thoughts. I was productive and proactive in learning how to function in my new unanticipated state. I wanted to take control of my situation. I focussed on dealing with my noise sensitivity and tinnitus. I gradually learnt to cope more with everyday sounds. I set myself small targets to work towards and celebrated my accomplishments. I started to go outside and surround myself with difficult sounds, progressively increasing the exposure time with each day. I discovered where the best places to sit were in a restaurant with regard to limiting background noise, and learnt how to direct my hearing ear towards sources of conversation. I realised the power of subtitles, which enabled me to access all the dialogue when watching films and TV series. My boyfriend, and close friends and family learnt to walk on my right-hand side so that I would be able to converse with less effort. I began to study the movement of peoples’ lips to help me make sense of speech in noisy environments. I learnt my physical limitations. My emotional health, however, I didn’t even consider.

Hearing loss grief is something that medical professionals didn’t talk to me about. No recommendations were given for support groups or information sources. I’m not sure if the absence of emotional guidance was due to the language barrier, or if it generally isn’t offered to patients here in Spain. Perhaps those affected by hearing loss are expected to search for the type of help they feel will be the most effective for their situation. I haven’t widely verbalised my feelings of the different stages of grief I underwent following my hearing loss. Only those closest to me know the sadness I have felt. In fact, the impact of my hearing loss grief, and the importance of dealing with it in order to move forward in my hearing loss journey, is something that I’ve only recently started to pay much thought to.

There are so many different types of hearing loss, all that come with their own challenges and strains of grief. I wonder if having the time to prepare for the known gradual decline of hearing with age or a health condition brings any comfort. Yet, knowing loss is imminent must also present a tremendous burden. My hearing loss was sudden. I had no time to prepare. I had very little understanding of the practical issues regarding hearing loss. I had no awareness of the mental pain hearing loss could bring,

I felt guilty for feeling sad. I was swallowing down grief in giant gulps, trying to dismiss complex emotions. The pragmatic part of my character knew there were much worse challenges that life could present to me.

Then, several months after my sudden hearing loss, I was given some advice from a stranger, who I had briefly connected with online. I was told that, as with any other loss, I would need to grieve my lost sound with the attention it deserved. This advice proved so important in helping me address the emotional aspects of my new situation, and immediately made it feel acceptable for me to feel sad and allow myself to begin the process of grieving.

I suppose everyone with hearing loss will experience different emotions and stages of grief, and will deal with them in their own unique ways. I had periods of feeling angry. I was angry because I felt that I could no longer rely on my body; it had failed me. I contemplated the fragility of life. I felt sadness, isolation and exhaustion from missed words in conversations, that used to be so easy to follow. I continuously questioned my feelings as to whether they were a justified measure of grief and then learned to treat myself with more kindness. The acceptance, which took time, came ultimately when I sought a second medical opinion, and I was told bluntly by a specialist that it would be very unlikely that I would regain any hearing and that this was my new normal. I needed this closure.

I found the most help through my grief by talking to my boyfriend, who provided unfaltering support, strength, and compassion. I confided in him, explaining my feelings and new hearing sensations. We shared the experience of loss so closely and we found our own way to deal with these new circumstances together. I also reached out to others through writing about my hearing loss journey in my blog. I corresponded with people who were going through similar situations, and continue to encourage this communication. I now find comfort in being able to offer my advice and share experiences with others. Hearing loss grief remains one of the main topics of discussion.

I am reminded of my lost sound every day. Our senses play a significant role in how we engage with the world. For people, like me, who are accustomed to living in a ‘hearing’ world, our sense of hearing determines how we enjoy music, how we recognise the voices of our friends and family, and how we interact socially. I don’t want to forget life before my hearing loss and I consciously hold onto memories of past experiences when having the full ability to hear made these times so special – times spent enjoying music festivals and memories of past holidays, when my hearing or noise issues didn’t even need to be considered.

I am proud that I carry a tiny piece of my hearing loss grief with me; an invisible scar. Like other scars on my body – shadows of scuffed knees from playground games, teenage acne, and surgical scars – I regard it with pride. My scars are evidence of victories over health issues. They are evidence of healing. My scar of hearing loss grief is something I acknowledge every day. Yet, it’s much more than grief or sadness; it’s a little bit of strength I take with me everywhere. My hearing loss grief is part of my story.

This article was recently featured on The Limping Chicken – the world’s most popular deaf blog!