A (long-winded) vent from someone who has been HoH since birth and has been progressively losing their hearing.
I am a 20-year-old Brazilian woman who is deaf/HoH. Well, a good part of my father's side of the family is also deaf/HoH; I was born with progressive hearing loss of unknown origin and I had surgery at age 5 and will probably have another one. I recently had an audiometry test, and my hearing had worsened significantly compared to the last test two years ago. This came as a huge blow to me, and I’ll explain why. To start with, I never received support at school—except during high school—and my hearing impairment was always treated as a matter of how much effort I put in, as if that alone could magically fix everything.
My father has the same condition I do and has currently lost all hearing in one ear, yet throughout my life, he was always very harsh about my inability to hear—to the point where my ENT doctor had to call him out on it. My father used to scold me (and still does) and cover his mouth while speaking, making lip-reading difficult, as if that would somehow restore my hearing. I don't blame him, though; that’s simply how he was raised—as a 50-year-old man from the countryside. But the point I want to make is that my family doesn't "belong" to the Deaf community; instead, they view their impairment as something terrible, because that is how *they* were treated.
My grandmother never even told my aunt that she wears hearing aids. She is a devout Pentecostal, so I grew up hearing some pretty heavy things—like "your hearing difficulty is a hereditary curse"—which caused me to internalize terrible things about myself and my hearing. My oldest aunt doesn't use oral communication either, and my grandmother makes all her decisions for her; furthermore, she doesn't know LIBRAS (Brazilian Sign Language) because, according to my grandmother, God will make her hear and speak again—and her doctor even claims that learning sign language would make her "spoiled" or lazy.
Well, you’ve seen the chaotic environment I grew up in (and yes, I go to therapy.); all my life, I’ve had to bend over backwards to fit into the world and struggle to make others understand me. The result? Years of bullying and social exclusion, because people hate having to repeat themselves. I started wearing hearing aids in late 2022, and that social aspect improved significantly.
The problem, however, is that my hearing has deteriorated sharply in a short time: two years ago, it was conductive, but now it’s mixed—I went from 43 dB in one ear and 46 dB in the other to 50 dB in both. To make matters worse, my hearing has suddenly deteriorated significantly over the last few days—I don't know if I’ve suffered sudden hearing loss. The point is, I’m losing my hearing at a frightening rate.
When I got the audiometry results, I was devastated—not because I hate the condition itself, but because I’m terrified of going through everything I endured in childhood all over again. I might have to learn LIBRAS (Brazilian Sign Language), and that’s fine, but the realization that the world is going to hit me even harder makes me feel like I’m grieving while still alive. And as I mentioned, I have no connection to the Deaf community, which makes me feel isolated; I have no one to talk to about this, and my family treats my pain like a joke. Honestly, I don’t know what to do or how to cope with this. I’m sorry for the long post, but I needed to vent somewhere.