I have joined the team at the Foundation just over three months ago as Health Manager. I have pretty much lived my whole life with some degree of hearing loss due to a hereditary condition called Otosclerosis. The degradation of my hearing loss became incapacitating in my late 30’s, early 40’s. This degenerative condition affects the bones in the middle ear which continuously grow and impede sound conduction to the cochlea. This is accompanied, in my case, with constant tinnitus and mild occasional dizziness. Hearing loss is defined as a hidden disability and can be challenging for others to keep in mind.

There is no effective drug treatment for otosclerosis. Hearing loss can be improved with the help of hearing aids and /or surgery. Both come with their advantages and drawbacks, however, modern technology has made amazing progress to provide very performant and discreet hearing equipment. I am very fortunate to be able to access very effective hearing aids through the NHS. With 4 different settings, the equipment is linked to my mobile phone via Bluetooth allowing me to have telephone conversation directly through my hearing aids.

Working with hearing loss is challenging on many levels, despite the support of my hearing aids and the positive support I have received at the Foundation. Every single communication/interaction requires me to be fully concentrated, there’s no such thing as effortless communication for me, this can be very draining physically and mentally and often leads to high stress levels. One of the consequences of having to be always focused is the stern or concentrated facial expression which can lead some people to think I’m having a bad day.

The challenging issues for me are:

• No directional hearing
• Crowded or loud environments
• Mishearing
• Processing information
• Stressful environments
• Sensory overload

My hearing impairment will further degrade with time leading to a possible need for a cochlear implant as the bone growth is affecting 15% of the cochlear area impacting the neurosensorial hearing pathway. On top of using hearing aids daily, I also learn finger spelling in both French and English sign language (sign language is not universal and I’m a native French speaker). Amazingly, even in BSL (British Sign Language) there are regional variations of hand gestures which further complicates learning. I take lip reading classes to offset my hearing loss to some extent.

The Foundation has been supportive and accommodating. As such, at times, I can record online meetings with the permission of the participants. I know help is at hand and regularly offered if I need support.  It is helpful for people to refrain from whispering (even the best lip readers miss about 40% of what is being said), make sure people have my attention before speaking, quiet spaces and good lighting all contribute to supporting my work day. Being considerate is key to communicating with someone living with hearing loss, avoiding phrases such as “never mind it doesn’t matter” when asked to repeat is very helpful. It is a work in progress for all involved.