One thing about us with OI – we’re VERY stubborn. No one can tell us what to do, even if we secretly think they’re right. So when I started to lose my hearing, I was determined it wasn’t ANOTHER thing I had to deal with.
I didn’t notice it at first, as I think it started in lockdown. We were all inside and not socialising so it was very subtle. I noticed I was turning the TV up a little more – but that’s normal right? I didn’t think much of it and no one made any comments. But then when we were going back out into the world again I noticed that I was saying “pardon?” so much more. My job is literally public speaking and I would start to worry about the Q&A parts of my sessions, knowing I had to be able to hear them in order to answer them correctly and do my job.
I’d ask my family to not cover their mouths when they talk, realising now I was lip-reading more than I thought I was. When I moved into my own flat – bliss. But when people came to visit, everything sounded like I was underwater. I started to panic but didn’t want to “let on” either.
It was when I literally couldn’t hear my brother at all when he came round that I knew I needed to get a hearing test. We always play Mario Kart together and looking at the TV and having the sound on – was impossible. I could feel myself panicking and feel so embarrassed. It sounds so simple and silly. But bones? We know how to deal with them. Break, painkillers, rest – easy. Hearing? A whole new world, that I wasn’t sure would ever come back.
I also felt like having hearing aids was just another disability thing which I think was probably a bit of internalised ableism seeping through. It wasn’t that I was embarrassed about having a hearing aid – but I think I was embarrassed that it wasn’t something else I couldn’t do and the aid confirmed that. Silly brains.
Anyway, after 3 YEARS – yes years. I finally took the plunge and it was confirmed I have conductive hearing loss. I wasn’t offered hearing aids at first as the hospital wanted to know the cause of the hearing loss. But as we know, it’s common in OI so I wasn’t that surprised.
1 year later and this month I’m finally being fitted for proper hearing aids. I’m so excited to be able to listen to people without struggling or getting headaches so much. So, if you’re like me and realising you too may need a hearing test. Just go for one. It takes so long to get one and get systems in motion that you wont be thrown into any quick decisions. It’s okay to accept help that isn’t about our bones. And come on – us OIers need to be able to chat away, it’s the thing we do best!
If you want to read more about hearing loss and OI you can download the BBS Factsheet here: Hearing Loss
