Hearing Loss: Come introduce yourself and connect with others

Hi everyone.. I’m new here. I’m a 45 year old with bilateral profound hearing loss with gradual onset over the past 30 years. My hearing loss is related to a genetic bone/connective tissue disorder called osteogenesis imperfecta. I currently use a bone anchored hearing aid (BAHA) on my right side. I no longer use a hearing aid on my left because the loss has progressed to the point that it no longer helps. I tried to learn ASL but it was challenging and I don’t know anyone who uses ASL anyway, so I gave up on that. I’m pretty isolated now because I can’t do any group social activities, even one-on-one conversations are becoming challenging. Fortunately I have an understanding partner who supports me and I’ve always been pretty introverted so I just spend a lot of time alone. I’m curious how others cope with the social isolation that comes with profound hearing loss..?

Hi everyone.. I’m new here. I’m a 45 year old with bilateral profound hearing loss with gradual onset over the past 30 years. My hearing loss is related to a genetic bone/connective tissue disorder called osteogenesis imperfecta. I currently use a bone anchored hearing aid (BAHA) on my right side. I no longer use a hearing aid on my left because the loss has progressed to the point that it no longer helps. I tried to learn ASL but it was challenging and I don’t know anyone who uses ASL anyway, so I gave up on that. I’m pretty isolated now because I can’t do any group social activities, even one-on-one conversations are becoming challenging. Fortunately I have an understanding partner who supports me and I’ve always been pretty introverted so I just spend a lot of time alone. I’m curious how others cope with the social isolation that comes with profound hearing loss..?

Hi! My name is Liz and I am new to this group. I have bilateral severe to profound hearing loss and wear a cochlear implant on my right side and a hearing aid on my left side. Started wearing hearing aids almost 40 years ago. Being actively involved with HLAA for decades has helped me to learn and grow. Life is good 🙂

Hi...... I struggle with the same issue of isolation. It has been gradual but as my hearing got worse I isolated myself more. It became just so difficult to struggle to hear.... also exhausting. Last month I could still hear on my phone but now I cannot. Or the tv or computer. My husband and I write notes to each other but he has arthritis in his hands and it is painful so he doesn't like writing. I try to avoid depression but some days........

Summer has helped. I spend as much time outside as I can. I have a small garden to tend, also try to walk three days a week. I write letters to friends and text and e-mail. All of these things are mood lifters and help.

My brother and sister both have osteogenesis imperfecta so I understand a little about your situation in that regard. Two of their children and one granddaughter also have OI. Childhood was rough for both my siblings but they have done well overall as they have gotten older. I think this is because they are less active. I wish you luck with your struggles. Hang in there. Judy

Hi everyone.. I’m new here. I’m a 45 year old with bilateral profound hearing loss with gradual onset over the past 30 years. My hearing loss is related to a genetic bone/connective tissue disorder called osteogenesis imperfecta. I currently use a bone anchored hearing aid (BAHA) on my right side. I no longer use a hearing aid on my left because the loss has progressed to the point that it no longer helps. I tried to learn ASL but it was challenging and I don’t know anyone who uses ASL anyway, so I gave up on that. I’m pretty isolated now because I can’t do any group social activities, even one-on-one conversations are becoming challenging. Fortunately I have an understanding partner who supports me and I’ve always been pretty introverted so I just spend a lot of time alone. I’m curious how others cope with the social isolation that comes with profound hearing loss..?

Hello Gaiagardener, I became deaf in 1 ear in the the late 90's and have severe to profound loss in the other. I have moved from using a hearing aid to a cochlear implant a few years ago. I am moved to write you because of your comment about being "pretty isolated and can't do any group social activities". I think that we with hearing loss are so lucky to have it during this age of technological revolution. Do you dismiss the opportunity to join all kinds of social / interesting groups through, HLAA for example, with the help of Zoom or whatever? Ironically, with the Pandemic, it is as though we can be on the same playing field as those with no loss. And of course there is the captioned phone.

Hi...... I struggle with the same issue of isolation. It has been gradual but as my hearing got worse I isolated myself more. It became just so difficult to struggle to hear.... also exhausting. Last month I could still hear on my phone but now I cannot. Or the tv or computer. My husband and I write notes to each other but he has arthritis in his hands and it is painful so he doesn't like writing. I try to avoid depression but some days........

Summer has helped. I spend as much time outside as I can. I have a small garden to tend, also try to walk three days a week. I write letters to friends and text and e-mail. All of these things are mood lifters and help.

My brother and sister both have osteogenesis imperfecta so I understand a little about your situation in that regard. Two of their children and one granddaughter also have OI. Childhood was rough for both my siblings but they have done well overall as they have gotten older. I think this is because they are less active. I wish you luck with your struggles. Hang in there. Judy