Communicating Through the Face Mask Barrier

Unfortunately, through the two layers of face-coverings, her speech reached my ear as a series of unintelligible scrambled tones and fragments of muffled words.

Image by Ирина Ирина from Pixabay 

For over a month, people here in Madrid have been wearing face masks on the crowded city streets to help limit the spread of COVID-19, and it is obligatory for travellers to use face coverings on public transport and in shops. Face masks pose challenges for people with hearing loss, who rely on clearly articulated speech and/or lipreading for effective communication. 

I have had some positive experiences, especially in small shops, where shopkeepers have used hand gestures to help aid communication when I’ve failed to understand something they have said through their mask. I have also had some frustrating and upsetting incidents. During a recent medical assessment, I interacted with three healthcare workers, who each had a different method of communicating through the face mask barrier. 

Continue reading “Communicating Through the Face Mask Barrier”

Brad’s Hearing Loss Story

She came round the corner just in time to watch me vomit on the side of the street. I think that was the moment she internalised what was happening.

For 10 years, I have been an avid listener of storytelling podcasts such as The Moth and Risk!. There is something soothing and therapeutic about listening to the voice of someone telling a true story and in learning about extraordinary things that have happened in their lives. The experiences of others, whether key life events or comical anecdotes, not only have the potential to inspire and shock the audience but can help people overcome difficult times; by finding relatable elements in these personal stories, the listener and the storyteller can share the experience. 

When I learnt that New York-based storyteller, writer and performer, Brad Lawrence, like me has hearing loss in his left ear and also Ménière’s disease (a disorder that affects the inner ear, causing vertigo and hearing loss), I was keen to know more about his story. 

Brad kindly agreed to an interview via Skype where he spoke openly about how hearing loss and Ménière’s disease has impacted on his life. During the conversation, he shared his bright outlook through amusing accounts and also revealed his greatest hearing loss fear.

Continue reading “Brad’s Hearing Loss Story”

Behind the Face Mask 

Image by Gabriele Lässer from Pixabay

The Spanish government has started to relax lockdown restrictions aimed at curbing the spread of coronavirus. In Madrid, we spent two months inside our homes, under strict measures, only being allowed outside for a few distinct purposes such as to go to the supermarket. On Saturday 2nd May, we were finally able to go for a walk and to exercise outdoors. 

With many people currently wearing face masks in public places to help reduce COVID-19 transmissions, I have realised that this poses a challenge for people with hearing loss.

I have single-sided deafness (SSD), the result of a sudden hearing loss in 2016. I have a profound hearing loss in my left ear and functional hearing in my right ear. Although I am thankful for my remaining hearing, having only one working ear comes with unique challenges. 

Continue reading “Behind the Face Mask “

Anthony’s Hearing Loss Story

Since I’m blind, the sound I can’t take for granted any more, literally means the world to me. It is the key to my independence, to the travels and adventures I’m having and to the communication that keeps me connected and grounded in this world.

Anthony first contacted me after listening to Hearing Me, an audio documentary, which gives a glimpse into my world, following my experience of sudden hearing loss.

He wrote to tell me that he was ‘deeply affected’ by the way my story had been brought to life. He told me that he also has hearing loss, though he remarked, ‘For me, it means more than just that.’

I was intrigued to find out more about Anthony, and he allowed me the opportunity to interview him via Skype when he told me his story.

Continue reading “Anthony’s Hearing Loss Story”

Some Kind of Vestibular Disorder 

With a lack of coordination-control and a pounding head, I feel both drunk and hungover. I’m walking on sand, sinking with every step.

Image by Pete Linforth from Pixabay

It’s Sunday afternoon. I’m lying on the sofa, a cushion between my knees. The culmination of pressure in my head and ears commands my attention. I feel as though I’m continually falling. I can’t rely on my legs to keep my balance. I’m dizzy. The force inside my head is making my eyes water.

I’m trying to focus my gaze. The small fan is rotating slowly; every few seconds it blows in the direction of the table making the tassels of the table runner dance in the soothing breeze. The window shutters are closed, keeping out the strength of the brightness from outside. 

Continue reading “Some Kind of Vestibular Disorder “

Airport Workers – Please Stop Shouting

Image by Jan Vašek from Pixabay

A friend of mine recently told me a story about how her elderly grandmother, who is in her eighties, had travelled to Spain. It was only the grandmother’s second trip ever, travelling abroad. 

My friend, her mother, and the grandmother were all travelling together and the grandmother was briefed about what to expect at the airport. Whilst packing, my friend and her mum had distributed their clothes and toiletries between the three combined items of hand-luggage. They explained to the grandmother that, although they had done the packing for her, should she be asked by a security worker whether she had packed her own bag, to confirm that she had. The purpose of this question, they assured her, was intended for crimes considerably more sinister than sharing luggage space.

Continue reading “Airport Workers – Please Stop Shouting”

No End to the Record

At night-time, it loves the limelight, gobbling it up with glee. The more I focus on it, the more layers of noise I discover.

To mark the end of Tinnitus Week, I am sharing a post I wrote nearly two years ago. At the time, I was struggling to sleep due to my tinnitus. One night, when I was feeling particularly frustrated from lack of sleep and at my failed attempts to ignore the unwanted sounds, I decided instead, to give my attention to my tinnitus and really focus on the types of noises I could hear. I hoped that if I could make peace with the different elements of my tinnitus, I could learn to accept its intrusion on my life and start to manage it more successively. 

The more I listened, the more diverse the sounds became. I started to make notes of what I could hear, which culminated in this blog post:

Continue reading “No End to the Record”

Please Sign the Petition for More Tinnitus Research!

Give People With Tinnitus the Hope for a Cure!

This week is Tinnitus Week.

One in eight people in the UK has tinnitus and for some, the condition can be completely life-changing. Studies have found that people with tinnitus score significantly higher on the depression and anxiety scale and lower on self-esteem and well-being.

Here I am, talking about the effects tinnitus has on my life:

 

The British Tinnitus Association are focussing heavily on the importance of moving forward with tinnitus research to ultimately find a cure. They have launched a petition pushing for the government to commit more funding to tinnitus research. 

To show your support, please sign the petition for more research into finding a cure!

It’s so important to so many people: http://chng.it/HSMDM8Gv

You can also help reach more people by sharing this post and encouraging others to sign up too. Let’s make a real difference this #TinnitusWeek!

Thank you!

 

Working Together to Find a Cure for Tinnitus

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.

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

Eva’s Hearing Loss Story

‘… a few months back, I decided that I was going to do whatever I wanted to do, without hesitation…What happened? I wasn’t perfect, but I was pretty damn good!’

Following my hearing loss in 2016, I started writing a blog as a way of documenting my thoughts, feelings and observations. It is through my blog that I have connected with many people who have experienced different forms of hearing loss, all with their unique stories.

Hearing loss can present many challenges, both practical and emotional, to the lives of those affected. When we exchange hearing loss stories, we have the opportunity to increase our understanding of the difficulties that living without full sound can bring, and we can use this knowledge, and the advice of others, to develop our coping mechanisms. I have realised the comfort in sharing experiences. Sharing my story has helped me to feel part of a supportive community and I feel less alone in my hearing loss journey.

Let’s Meet Eva

I first ‘met’ Eva in April 2019, when she contacted me through my blog, two months after experiencing a profound sudden hearing loss in her left ear, very similar to mine. She also has tinnitus and some slight balance issues, which accompany her hearing loss.

Eva is 45 and is from Southern California. She enjoys hiking in the mountains and the beautiful Californian terrain, playing golf, yoga, attending her local book club meetings, and spending time with her friends and family. She was working as a director in the business office at a local college but recently stepped down from this demanding position as a result of her sudden hearing loss. She is now in a less demanding role at the college and continues to work full-time.

She has a positive approach to dealing with her single-sided deafness and is working to recover her life since her loss. Eva and I have talked a lot about hearing loss grief, something which we both identify strongly with. She recently remarked, “I hope someday soon my usual cheery self will be my default setting again and not something I have to work so hard to achieve each day. I’m getting there and have made tons of progress.” She recently acquired a CROS hearing aid and she is currently trialling it to see if it will provide her with adequate support. She says, “The jury is still out”.

Eva and I have formed an online friendship, based on regular communication through Email. She kindly allowed me to interview her, during which she gave a very honest account of her hearing loss story…

Eva, has your life changed since your hearing loss?

The first six months following my hearing loss were significantly difficult, but things are starting to settle now that it has been 9 months.

At first, I could not sleep. I do not know if it was tinnitus or anxiety, or my body freaking out due to not receiving input from one ear. I would wake up in a severe panic any time I’d fall asleep for even just a few minutes. I am sleeping much better now, my body has adjusted. It is still not as good as it was before the hearing loss (I was a great sleeper, could sleep 8 or more hours straight if you’d let me), but I am getting at least 4 hours per night each night.

I also had a lot of sensitivity to loud noise, so it was difficult to be in many situations, such as restaurants, church, family parties, etc. I kept pushing myself to be in noisy situations and I find that I am more used to it now, it doesn’t bother me very much anymore. Loud noises would sound so terrible as they entered my damaged ear and would cause awful noises, it still does but I am more used to it now.

Of course, my limited hearing makes certain situations difficult. I have to lip read a lot more, I’m getting better at it. I am very aware of where I am in a room to ensure I will be able to hear. Sometimes people call out to me or approach me from my deaf side, and I have no idea they are there. I am often surprised to see someone standing next to me, sometimes they are talking to me and I have no idea.

Finally, I feel this has greatly affected my relationships with those closest to me as it is difficult for them to understand why I am down. I try really hard not to be down, but it is difficult and I think they may become tired of my negative energy. I know I will come out of this, but it is taking time and I cannot force it. I need time to grieve.

What have you found the most challenging about living with hearing loss?

Strangely, the hearing loss itself is not the most challenging. It is challenging, but my one good ear provides sufficient hearing to function in most situations. The more challenging part is the psychological and emotional part. The grief, the depression, the anxiety, the inability to sleep, the toll it has taken on my relationships, the blow to my self-confidence.

What advice would you give to someone who has recently experienced a sudden hearing loss?

I believe meditation, taking walks, and positive journaling has helped me tremendously to cope with the psychological turmoil that comes with sudden hearing loss. I think any person, healthy or not, should start practicing meditation, so that when something terrible strikes (and it will!), you have built experience meditating. Same goes for taking walks and positive journaling. It is very difficult to get used to your entire world sounding different, the tinnitus, etc. and you can never escape it, so keeping your mind calm and focusing on other things (by meditating, journaling, taking walks) will help get you through.

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Eva also gives encouragement to others and shares her advice in my Facebook support group. In a recent post, she shared her positivity with the other group members in an inspirational comment:

‘… a few months back, I decided that I was going to do whatever I wanted to do, without hesitation. I was going to end the negative self-talk and the fear and just get out there and do my best. I got on an airplane, I swam underwater, I went dancing at posh night clubs, I went to a concert, I went hiking on jagged trails, all things I was either terrified to try (irrational fear that my ear would hurt or blow up or something crazy) or things that I thought would be overly difficult where I’d look like a fool. What happened? I wasn’t perfect, but I was pretty damn good and I felt proud and more encouraged each time. I haven’t stopped since and I find that the more I subject myself to it, the better I get at being in crazy, noisy, rocky places where I thought I’d never be able to function again.’

I really admire Eva’s optimism and motivation in moving forward with her life following her hearing loss. Thank you, Eva, for sharing your story.

This article was recently published by Hearing Link.