Share Your Story: Nathalie
It was the birth of her daughter that prompted Nathalie to finally get her hearing checked out. After having suspicions that something might not be right for some time, Nathalie’s concerns were confirmed. At 28-years-old Nathalie was diagnosed with vestibular schwannoma and bilateral hearing loss.
“I was 27 when I noticed that my hearing had become really bad. I had just given birth to my daughter and my husband would have to yell loudly so that I could hear him. Sometimes, my daughter would be crying in the other room and I wouldn’t know. Everyone just thought that I wasn’t paying attention, but actually, I couldn’t hear.”
“When I was first diagnosed it was very stressful… apparently my hearing is similar to that of a 90-year-old. I also found out that I had a vestibular schwannoma, which is a benign tumour on my left ear. It was scary… especially not knowing what treatment would be required...”
“Now, I need to do a yearly MRI scan to monitor the tumour for the next 5 years. I only wear one hearing aid as the doctors are waiting to see if the tumor is growing or not before I can get a second hearing aid. If the tumor does grow, they will have to remove it and I will have a complete hearing loss in the left ear.”
“It’s the perception too that’s difficult. [People think] that you’re born with hearing loss or develop it when you are much older. It is tricky to find out in your late 20’s.”
Nathalie purchased her hearing aid shortly after she was diagnosed with hearing loss and has been wearing it for the last two and a half years. It has made a tremendous difference to her life, especially at work where Nathalie is a teacher and a Learning Area Leader.
“When I didn't know that I had a hearing loss I would normally sit at the back in meetings to be with my work friends. Of course, they [my colleagues] could still hear perfectly and pay attention whilst sitting in the back but I really struggled.
After the meeting, often my friends would be talking about something and I would be like “oh! I didn’t hear that… I didn’t know that that’s what they were talking about”. My friends would be surprised because of course I was right there.”
“It’s just the subtle everyday things that I struggled with. Especially, when people would say “oh, you should have known, we talked about it.”
“I can definitely communicate better now that I have hearing aids – they are life saver!”
Coming to terms with her hearing loss has made a huge difference at home, where Nathalie lives with her husband and 3-year-old daughter.
“It’s something mothers take for granted – hearing. [Before I got my hearing aid] I became quite paranoid because I couldn’t hear her [my daughter]. I didn’t even want to sleep in a separate room, otherwise I wouldn’t be able to know if she was okay…”
“My daughter is now 3-years-old and understands that I have hearing loss. She knows to pat me if I can’t hear. And she will be like “oh mummy, don’t forget your hearing aid!”. It’s really cute actually. She has always been curious about them [my hearing aid].”
But it hasn’t all been smooth sailing. Nathalie’s hearing loss has come with its own set of challenges. New insecurities, interactions with full hearing friends, and even sweating have at times proven difficult.
“I think people with full hearing just don’t understand what it’s like…
…I'm quite a bubbly person so I don’t really dwell on the negatives or like self-pity, but sometimes I hear people say things such as “it’s just a hearing loss, it’s not that bad since you can still hear a little bit”. When I think back on it, I realise that those words were pretty harsh… where is the empathy in that? People don’t realise how hard it is for someone with hearing loss and how important our hearing is as part of our everyday lives. Just because we can’t visually see someone with hearing loss doesn’t make them less important.”
“The thing with hearing loss is that I can still hear, but sometimes I miss certain information. When I’m in a meeting and am not quite understanding, I have to ask lots of questions. If the other person doesn’t know about my hearing loss, they will get annoyed repeating themselves and start to raise their voice.
It’s like they are blaming me for it, when having a hearing loss isn’t my fault.”
“Another thing with hearing aids is the sweating. I try to avoid hardcore sports, but I have been doing F45 [cross-fit training].
I never wear my hearing aid during that time because you have to jump around a lot and you're sweating, so your hearing aid gets very sweaty and uncomfortable. That means I have to really pay attention to what the instructors are doing. I usually have a training partner that tells me what to do or I just follow other people a lot!”
Nathalie hasn’t let the insecurities or challenges hold her back. Since being first diagnosed, Nathalie has moved into a more senior leadership role at work. This position has seen her be more open with her hearing loss.
“I tell my team right away. I let them know that I am hard of hearing and show them my hearing aid. I don't apologise, but I do let my team know that sometimes it may look like I'm not paying attention, but I am, and that sometimes I'll ask them to repeat themselves a couple of times until I can understand what they're trying to say.
It has made such a difference compared to when I first started my job, where I didn't want to tell anybody. That was quite hard… I used to think that hearing aids were for older people and so was very insecure. I have started to embrace it now.”
“At work, you just need to be true to yourself and let others know what you're about. Having a disability doesn't make you any less. People just need to remember that. There's always a way around your disability as well…
…I think it's really important to just believe in yourself, rather than having pity. Because I'm a high school teacher, I know some kids that tend to dwell on their hearing loss, and I think they just need to have that positive lens. Staying positive is so important and to have humility and be grateful.”
As a teacher with hearing loss, Nathalie is extra conscious of making learning inclusive for all her students, especially those with hearing disabilities.
“We do get students with cochlear implants. I notice that a lot of these kids feel really insecure, because everyone else can see that they are different. What’s important to do is just make everyone feel included. I like to show my students my hearing aid to let them know that I am not perfect and that I am proud to be wearing it.”
“To try help kids that have hearing loss in my classes I am quite visual. I try to give lots of information with images, or through demonstrations so that the kids can watch my actions and my movement…
…It’s about time that we really push the hearing awareness. People overlook it and think it’s not a big deal but it impacts your whole life. That’s why sharing our stories is so important.”
“It’s easy to not be aware of what other people are going through, especially if it's not an obvious disability.”
And she has some advice for others beginning on their hearing loss journey.
“If you notice something is not right about yourself, get it checked right away!!”
“It will be okay, things will be alright. Just live your life and don’t let anything stop you from achieving your dreams and aspirations. You are not less than anyone else, in fact you are stronger. Keep moving forward, learn and try new things and get out of your comfort zone.”
In our Share Your Story series, Deaf and hard of hearing New Zealanders open up about their experiences.
Stay tuned for more interviews, which will soon be released to our blog: