Hearing Loss and Stigma - Let's Change it!
by Envoy Medical Staff Member, on December 31, 2020
I was implanted with the Esteem® in 2006 and it changed my life. I had never, spoken about my hearing loss to anyone outside of my family prior to this, and my family knew to leave it alone.
My own inability to accept and talk about my hearing loss caused frequent stress as I struggled to hide it. I was paralyzed with fear over this problem I couldn’t solve and advocating for myself was a bridge too far.
Oxford dictionary defines stigma as: a mark of disgrace associated with a particular circumstance, quality, or person. I certainly felt the stigma of hearing loss, and for many years I allowed it to get in the way of an improved quality of life.
I am certainly not alone. Hearing loss is the third most common chronic health condition in the US after arthritis and heart disease and you would be hard-pressed to find any individual who does not know someone who struggles with it.
For over 25 years the Hearing Industries Association has conducted large surveys called MarkeTrak to understand the hearing industry from the consumer’s perspective. The survey is large and comprehensive and therefore gives a great view of how most of us are handing our hearing loss. The most recent survey published in 2019 shows hearing aid adoption rates at just 34%, up slightly from the 25% adoptions rates which had remained stable over the last 25 years.
What is baffling is not just the number of people not treating their hearing loss but the lack of urgency demonstrated by decision makers and sometimes medical professionals.
When you mention to your primary doctor you think you might have hearing loss, this response is almost never met with a clear referral for diagnosis and treatment combined with education on the detrimental health effects of not treating it.
While insurance covers the cost of diagnostics or verifying you have hearing loss the treatment is rarely covered and this also enhances feelings of inadequacy.
The stigma I felt was enhanced by insurance companies deeming hearing loss not worthy of treating and doctors frustrated with not having clear answers for their patients.
Today we know the failure to seek treatment can have long term implications. Changes in hearing loss affect our communication ability and cognitive function, and can cause depression and disorientation, affecting quality of life and the whole person, not just hearing.
Hearing loss was recently qualified as a risk factor for accelerating brain aging by reducing brain volume and cognitive abilities which increases the urgency and importance of better coordinated care.
So what can we do now?
We can start talking about it. My family was shocked when they heard me telling other family members about my hearing loss, and if felt good to share. Yes, I have hearing loss (it’s not my fault!). Family and friends had questions and were shocked to find out insurance didn’t provide help and there wasn’t a whole lot of options. Their shock vindicated me. Yes, it is crazy and it doesn’t make sense.
In college I wouldn’t even request help discreetly. I struggled all of the way through. Today I look back and think -- wow I was a consumer there-- I should have been asking them how they could help me.
My hope is that we begin to recognize this stigma and call it out. The blame for these feelings is shared among lack of insurance coverage, insufficient education and a lack of policy. The loudest voices are the people with hearing loss because there are so many of us.
In the future we will be sharing more opportunities for Advocacy. In the meantime, we encourage you to use your voice when you can, even if it’s to tell the cashier you have hearing loss with a smile.
Education, an important part of advocacy
It is common to feel nervous or reluctant to schedule a hearing test. Whether it's you, or someone you know many people feel anxious putting their trust in someone new. A great first step is to take our free online hearing test which allows you to test your hearing in the comfort of your own home with your own technology and get a great snapshot. It only takes five minutes and it's empowering! Feel free to share this with others as it's a great self-help tool.