The Role of the Hearing Loss Advocate Survey

The biggest obstacle that those with normal hearing have is understanding what it’s really like to have hearing loss.

So, let’s try something new here. Grab a book and open it to any page. Hold it at the distance you would want to read it at, where the letters and lines are clearly defined and easy to identify. Now, move the book a little closer to your face. The letters should seem bigger and maybe a little less sharp. Move the book closer to your face again. Now you should only be able to see some of the letters up close and the rest as black shapes merging together on a white background. Get the book so close to your face that all you can see is black and white and the texture of the pages. 

You can’t read it anymore, can you? The words aren’t real, the phrases run together like rivers and the story has disappeared into a distorted black, inky mess on a white piece of paper. 

This is how those with hearing loss experience the world of sound—incomplete, incoherent. Hearing loss is slow, a creeping shadow that eats away at sound and speech inch by inch. It is a silent thief in the night who robs us over and over, one frequency at a time, until one day, we wake up and realize we have almost nothing left. And yet because the thief takes his time, moves so slowly, gradually steals little by little, we don’t realize what's happening until it’s too late. Or maybe we know it’s happening but refuse to accept it. The signs of hearing loss are not always obvious.

This is where the advocate survey comes in.  

Advocates, the friends and family members of those who have hearing loss, can be the reason people get help. They can also be the reason people avoid getting help. But, when someone is ready to take the next step along the hearing journey, the advocate survey can not only help paint the bigger picture for the hearing professional but it can also help the person with hearing loss accept the loss and gain the courage they need to battle it. 

Friends, coworkers and family can fill out the advocate surveys, but it’s best that it’s completed by someone who frequently interacts with the person experiencing hearing loss. They will pick up on things like what environments the person has trouble hearing in, what sounds or situations are harder for a person to perform in, how that person acts at work, at social gatherings and on the phone, and they will be able to identify the adaptive techniques the person has developed to compensate for the hearing loss.

Advocate survey questions about the patient may include:

Does the patient avoid social gatherings or outings?

Does the patient have trouble on the phone?

Does the patient’s voice change in volume while talking?

Does the patient have trouble when there is background noise or in large groups of people?

This same advocate should also give their own side of the story—how the person’s hearing loss affects them. 

Does the patient’s hearing loss ever cause you stress?

Do you ever hesitate talking to the patient because they won’t hear you anyway?

Would your life be more enjoyable if the patient wore hearing aids?

The survey responses may not always be what you want to hear. It may be hard to read the answers, hard to accept them, and anger, sadness or frustration may arise. But the survey helps to pull the book back and once again clarify the letters and words, freeing the reader to follow the story and not simply be stuck on a single, distorted page.

Take this real life example when I refused to accept that my hearing loss was making driving dangerous. The survey showed two very different perceptions:

My version: I hear fine when I drive. I don’t play the radio loud, and I barely miss anything my boyfriend says. It’s only hard when the road is bumpy or when it’s raining. I don’t read lips that much while driving. 

My boyfriend’s version: It’s scary sometimes driving with her. She always has to turn to look at me to understand what I’m saying, and she will stare at me while I talk…all the time. And then she keeps staring to see if I am about to say something else. She can’t pay attention to the road and hear what I’m saying at the same time. It’s dangerous.

When I read his answer the first time, I scoffed. When I read it the second time, I remembered how I’d almost rear-ended someone after a baseball game with my two-week old, brand new car. I read his answer again and again, and each time, I remembered the many times I’d ended up slightly out of my lane, had gotten too close to the bumper of another car or had almost sideswiped someone because I was simply trying to hear a stupid, single word. I even recalled accidents I’d gotten into because I had never heard the other car coming. 

I read the rest of his answers, and while I didn’t like some of them, they were the truth. And you can’t escape from the truth.

The survey is there to help identify the best hearing solution possible. The survey shows that hearing loss doesn’t just affect the one who has it but everyone around them. It provides a more complete image of how a person’s hearing loss is impacting their life. By looking at the bigger picture, you can help hearing professionals to better understand what products to fit someone with and what accessories or features to offer and include. Your answers may also help someone to better understand or accept their own hearing loss. 

By Sarah Bricker

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