Hi @larryplano Welcome to Mayo Clinic Connect's discussion group on hearing loss. You are right. HL is grossly misunderstood by those who do NOT have it, and that includes a lot of family members and friends.

Have you discovered The Hearing Loss Assn. of America in your research? If not, I highly recommend connecting with HLAA. Find out if there is an active chapter in your geographical area, and reach out to them if there is one. COVID has disrupted a lot of things, and the HLAA meetings are among them, but most chapters have adapted to using Zoom videoconferencing to hold gatherings/meetings. Many are educational, but some are socially oriented opportunities to talk about "IT". "IT" being how hearing loss affects our lives. The HLAA website is: http://www.hearingloss.org

HLAA is a consumer based group that shares information, educates, advocates and provides peer support. The organization was founded in 1979. It was then called "Self Help for Hard of Hearing People, Inc." (SHHH)I often give this organization credit for saving my life, my marriage, and my sanity...also my career.

My HL was diagnosed in the 60s when there was absolutely no support or help. Even the medical professional, including those in hearing healthcare field, had no clue how to help us, and no encouragement to offer. It was basically "Learn to live with it as nothing can be done for you." Most discouraged the use of hearing aids 'because they didn't do much and were too expensive.' Back then they were analog devices that cost around $400 each.

SHHH/HLAA has opened the world of communication to people with partial deafness. Consumers have not settled for bad answers, and have encouraged the development of better hearing aids, other forms of assistive technology and communication access, etc. The organization made sure that 'communication access' was included in the American's with Disabilities Act'. Still, far too many hard of hearing people don't get the message they need, and HLAA remains a well kept secret unfortunately. Professionals tend to not like groups that advocate and educate in the field they feel they know everything about, so many don't tell their patients about HLAA.

HLAA works hard to get information to the public, but it is a non profit that works hard on little money. The general public looks at hearing loss as a stigma related issue and has a lot of wrong information and attitudes. Those even affect the people who have HL because they are embarrassed to open up about it. Stigma is one of our worst enemies. Sadly, frustration, fear and anger are too.

HLAA is holding a national convention in Tampa next June. The conventions are amazing. Just being in a place where HL is the 'norm' is enlightening. Every meeting is captioned. Many are signed although very few hard of hearing people use sign language. We want to remain in the hearing mainstream and have learned that technology is what keeps us there. Few find sign language an answer. The tech we need goes way beyond hearing aids.

Where do you live? There are close to 48 million people in the United States who have partial deafness. There are many who live close to you. There may even be an HLAA chapter in your area. Please feel free to respond to this thread or personal message me.

No one has to live alone with hearing loss. And family members, friends, and co-workers need to better understand how to help us. There are ways to do that.

Jump to this post