I have a Progressive Bilateral Sensorineural hearing loss. Or I think that's what my audiologist called it. We found out I had a hearing loss when I was 10, and obviously, it has progressed into being very severe. I've been considered legally deaf since I was 13, and I'm 19 now.
But I don't know how to function anymore. My entire family is hearing. I'm the only one with any hearing related issues. I spent 2 years learning to read lips because I couldn't function with just sound, and my hearing aids helped a lot. But at this point in my hearing loss we don't know if it will continue to profound deafness, or stop where it is. I'm relatively ok with either. But it's a little scary. I love to sing, and to have that ability slowly stripped away from me is hard. They make deaf jokes at me all the time and laugh it off because it's no big deal. To them. It's a very large deal to me. None of them have ever gone to a doctor's appointment with me besides my parents, and they stopped going when I was about 14. My siblings don't actually know the extent of my hearing loss, and when I try to tell them, they accuse me of exaggerating or having "selective" hearing.
I started learning Sign Language when I was 15 out of necessity. I started to panic because my hearing loss had gotten much worse much faster than expected. While they predicted I would lose all of my hearing by my early 30s, the estimated time was now early 20s. No one in my family knows any Sign Language, and it's not from a lack of me trying to get them to learn. While I have only taken 3 years and am nowhere near fluency, I need them to do that process with me. And they haven't.
I had one profoundly deaf friend, and everyone else I know has perfect hearing. I don't get to use my Sign because if I speak and sign everyone tells me I'm being pretentious and trying to get attention, but it helps me remember and I thought might help them learn/associate words to signs. I'm constantly having to read lips or ask people to repeat themselves, and I still put up with the deaf jokes. It's exhausting.
My hearing aids aren't very helpful anymore, but I wear them because I know I should and they're probably helping in ways I don't realize. But I've noticed my speech is starting to become very forced. I have to consciously remember how to say certain sounds or they come out slurred. I don't realize I'm doing it until someone tells me I sound different.
Speaking has become a chore, and now, I just don't have a clue how to function with all my friends/family. It's too hard to understand all of them now. But they have no other way of communicating with me. So I don't really know where to go from here, and was hoping someone out there might have had to do the same thing or has a solution for me.
