Alex was 28-years-old when her doctor delivered a misdiagnosis that altered her life. She had sudden sensorineural hearing loss, a rare condition that if caught early can be reversed. Her loss, however, was detected too late, and as a result, she now lives with permanent hearing loss.
Since the day she finally found the answers from a specialist back at home in Colombia, Alex has navigated through living with sudden deafness and found an outlet in creating digital content for Instagram fitness and nutrition account. Today she has more than 36k followers.
Alex shared her story with Hearing Like Me to help raise awareness of this widely misdiagnosed condition. Alex, who prefers not to share her last name, lives in Hove (Brighton and Hove) in the UK and is an Architect. She also works as a project manager for healthcare projects.
What is Sudden Sensorineural Hearing Loss (SSHL)?
For most people hearing loss is gradual. However, Hearing Link defines sudden sensorineural hearing loss as a sudden or very rapid loss that can occur in either one or both ears. Their site states, “As the name suggests, SSHL is a sudden drop in hearing (within 12 hours or less). Some people notice a ‘pop’ before their hearing drops, or it can deteriorate noticeably and very quickly. It is not uncommon to wake up to the condition.”
The condition is serious and needs to be treated as an emergency. It can affect anyone regardless of age or any previous hearing conditions. If you experience symptoms of sudden loss of hearing, then you should seek emergency medical care.
Treatment for SSHL involves a course of high dose steroids. It is crucial to receive treatment as quickly as possible after the onset of SSHL. Once on steroid medication, recovery can take a few weeks or longer and may require a repeat course of steroids. Unfortunately, Alex was never given this opportunity.
Alex experienced what she calls her “first episode” in February 2020. She felt so unwell an ambulance was called, but instead of taking her to the ER, the paramedics recommended she see her general practitioner instead. It was there that she received a misdiagnosis of benign paroxysmal positional vertigo (BPPV) and was prescribed anti-sickness tablets. She was advised that her hearing would return within six weeks.
The next day Alex flew home to Colombia to visit her parents. They insisted she visit their family doctor, who referred her to a specialist. To successfully restore hearing after sudden sensorineural hearing loss, it is recommended you receive treatment within 48 hours. It wasn’t until six days after that first episode that Alex met with an audiologist and was given a correct diagnosis of SSHL. Alex said, “He explained the long term implications. I was treated with intratympanic injections, but was advised the chances of recovery were minimal.” Her audiologist was right – it was too late. Alex’s hearing loss would be permanent. As SSHL is not a well understood condition, no direct cause was given to Alex, but she was told it could have been caused by a virus.
Navigating Life with Sudden Hearing Loss
After learning of her diagnosis, Alex wrote on Instagram about how she went through a “bereavement process.” When asked what mechanisms she found to cope with her grief, she explained, “I was very down for the first couple of months, wondering why this happened to someone who never had any issues with her ears or hearing. I cried regularly and found it very hard to socialize or express my feelings. I started doing meditation which was really helpful in navigating my feelings. Also, the support of my wonderful family, especially my husband, helped immensely.”
When we discussed how Alex’s life journey has altered in the three years since her diagnosis, she explained that she now experiences a lot of anxiety around new people. “It’s been especially challenging starting a new job,” she said. “There is always that fear that I won’t be able to hear people and they might think I’m rude. I’m a lot more reserved and try to avoid big groups because it’s very hard to follow conversations. I end up so tired just trying to understand what is happening around me.”
Alex uses a basic CROS hearing aid provided by the NHS to assist with hearing. Unfortunately, like many others also find, it amplifies background noise, which makes it difficult to follow conversations and keep focus.
Not only did Alex have to navigate sudden life with hearing loss, she also experienced a very common symptom of SSHL – tinnitus. “It was isolating as I didn’t know anyone else who had the same condition or something similar that I could relate to,” she said. Eventually, Alex found a group on Facebook for people living with SSHL which provides a space to share stories and tips for coping. “It was so helpful to see that I was not alone,” she said. Although the tinnitus hasn’t gone away, she has learned to ignore it. “I find that if I pay attention to it, it becomes louder and more sounds start,” she said.
Alex has been creating digital food and fitness content on Instagram since March 2021. While she has always enjoyed fitness, after she lost her hearing, it became an outlet that helped her forget her diagnosis. It allowed her to express herself, so she started posting photos of her cooking online. Alex found a new happiness in focusing her energy on creating the content. Soon she found that other people enjoyed her content too. Gradually, she began posting partnerships with exciting food and fitness brands and her page grew by the thousands. In just two years, she has gained over 36k followers.
And the influencer has no plans to stop anytime soon. “I love that I get to be creative through food and media, meeting a lot of likeminded people and working with fabulous brands,” Alex said. “My goal is always to inspire people and to show them they can be healthy without giving up things they love!”
Outside of fitness and nutrition, Alex also enjoys astronomy. Using her telescope and camera, she translates how she feels living with a condition where the world sometimes spins. I asked if she thought using photography or other visual art forms was useful in helping people to understand hearing loss. “Yes, 100%,” she told me. In this photo she posted on Instagram, she captures a swirling star trail that tells a personal story.
“That photo was to show the star trails and how they form a circumference,” she explained. “This photo is how I sometimes feel in a world that’s spinning around. I have always been creative, so expressing my thoughts and feelings through media is much better than using words for me.”
Overcoming Challenges and Practicing Self-Love
Alex is an outspoken believer in self-love and body positivity. In one post she wrote, “Your weight might fluctuate but your worth will never change. Loving your body should be the goal.” This outlook has also guided her through her journey with SSHL and coming to terms with her hearing loss. “It’s helped me to accept my condition and embrace my new lifestyle,” she said.
A sudden hearing loss journey is never an easy ride, and Alex’s has seen her overcome some big challenges. She explains the hardest part was knowing nothing about her condition and going through that grieving process. As a lover of live music, she was also devastated at the thought of not being able to enjoy gigs anymore. But as time went on, Alex began to make sense of her loss and what she can and can’t do. Last year, she went to Glastonbury, the most famous music festival in the world. “It was one of the best experiences of my life,” she said.
Lessons from SSHL
It has been three years since Alex received her misdiagnosis and her world changed. If she could go back and give herself one piece of advice on that first day she experienced hearing loss symptoms, she says she would tell herself, “Look for a second opinion. I obviously trusted my general practitioner with his diagnosis, but that also meant my chances for recovery were almost non-existent by the time I was given the correct one.”
Sudden sensorineural hearing loss remains widely misdiagnosed. The Edinburgh Hearing Practice explains that the rare condition seems to be on the rise. They advise that while not all sudden hearing loss symptoms are a bad sign, they could be. Therefore, you treat it as such. If you begin to experience symptoms or you feel something is wrong, make sure you advocate for yourself and see a professional as quickly as possible.
If you are someone who is going through the same experience as Alex, she has this to say to you: “It’s normal to feel sad about your loss, but things will improve. Human bodies are amazing and they adjust to the changes. Allow yourself time to grieve, then find something that makes you passionate. Life is too short, so do all the things you want to do!”
“…Allow yourself time to grieve, then find something that makes you passionate. Life is too short, so do all the things you want to do!”
Support with SSHL
The Sudden Hearing Loss Support website has some great visual guides explaining the exact steps to take if you show symptoms of SSHL. They also have an online support group and list of charities that you can donate to. Donations fund research that is crucial in better understanding SSHL and developing treatments in the future.
Beth Tingle is a 27-year-old English graduate, and currently resides in Bristol, UK. Beth was born with congenital deafness to an otherwise all hearing family, and is currently navigating life with new sound after receiving cochlear implant surgery in April 2021. She is currently learning BSL.
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