As a person who has grown up with hearing loss, I have one big regret: I wish I knew back then what I know now.
What I didn’t know about living with hearing loss was just about everything beyond the hearing aid that was finally prescribed when I was 21.
I could have used help in navigating the hearing loss life, especially in my primary school years, most definitely in my teen years, and absolutely when I became an adult, when I had to make my own way through the communication terrors of working and socializing.
But since my younger years took place in the middle of the last century, there was no exposure or access to a role model or mentor, someone “like me” who could help me figure things out on a faster track. My parents taught me the importance of good communication, but they were “hearing“ people who were not familiar with the hearing loss life. I had no one to model assertiveness in having my needs met. No one to suggest how to handle challenging listening situations. No one to say, “you’ll get through this.” Back then, even my hearing aid professionals provided no support beyond telling me to “wear your hearing aids all the time and come back and see us in a year.”
Years later, I found life-changing support from groups such as the Canadian Hard of Hearing Association (CHHA) and the Hearing Loss Association of America (HLAA). By meeting other people with hearing loss and being involved in consumer associations, both in person and online, I learned strategies to hear and communicate better, a process that continues to this day.
But sometimes a more personal, one-on-one connection is needed. Someone who is new to hearing loss or who is struggling with its challenges can benefit from a confidential relationship with someone who has experienced the hearing loss life – a peer mentor. This connection can happen by a chance meeting with someone at a group like HLAA, or through mentoring programs that train volunteers to provide non-judgmental support.
Peer programs are used at various levels of schooling, including university, to help students acclimatize to a new way of life. In the workplace, peer mentoring helps employees adjust to the company culture and to strengthen co-worker bonds to improve employee satisfaction. The same simple model can be used in health issues such as hearing loss.
I’ve been involved in an Online Mentoring Program with the BC Chapter of the Canadian Hard of Hearing Association (CHHA-BC) for the last two to three years. As patience isn’t my strong suit, I didn’t envision myself as a mentor. In my 20-plus years of hearing loss work, I had avoided personal advocacy because I was afraid of losing my patience; I’m sure it would be counter-productive to tell a mentee: “C’mon, quit feeling sorry for yourself and pull it together!”
But two things attracted me to CHHA-BC’s new program. It was an online program, where both mentor and mentee could maintain anonymity, designed to protect the mentor from possible harassment. The weekly one-hour text chats through a secure site designed for the program seemed doable to me. In addition, my complacency as an experienced person with hearing loss had recently been shaken by the onset of severe, relentless tinnitus and hyperacusis. I remembered once again what it means to struggle with a hearing-related problem.
Training is key to a successful peer mentoring program. Mentors should be empathetic, able to listen, and to suggest strategies based not only on personal experience, but also on a solid knowledge of resources that would help the mentee. In my first year, I had three relationships that were all considered successful. Most of the struggles centered on whether to get a cochlear implant, how to be assertive in having their needs met, and how to disclose a hearing loss to an employer.
The main issue with such programs is attracting mentees to the program, and how to let people with hearing loss know that this special help is available. And even if they learn about the program – possibly from their audiologists – not everyone is comfortable, even in a confidential situation, talking about their struggles.
CHHA-BC also has a successful Youth Peer Support program. This group of young adults in their 20s and 30s has been passionate about reaching out to other young people who may be isolated from their peers with hearing loss. They hold social events which have led to successful mentor/mentee relationships both in person and online. This group is so committed to reaching out to others that they went on the road last summer, traveling through British Columbia and Alberta to connect with youth in remote places.
In spite of the logistical challenges of a peer mentoring program, there are clear benefits that drill down to one main one: Participants develop more successful and stress-free lives with hearing loss. Hearing professionals whose clients require additional support beyond hearing aids should consider adding peer mentoring to their services or finding an existing program. It can be informal; on several occasions my audiologists have reached out to see if I would connect with on one of their clients to share my experiences and answer questions, which I’ve been happy to do.
Peer mentoring makes a difference. Your clients need someone “like them” to say, “You’ll get through this. Let me help you.”
For online peer support, visit the Hearing Loss group on Mayo Clinic Connect.