Why People With Hyperacusis Are Often Undignosed or Misdignosed

It often takes patients who have rare conditions several years to get a diagnosis, that is the ones get diagnosed. Unfortunately there are many people who never receive the correct diagnosis, and are either misdiagnosed or undiagnosed. Those who expeeince physical pain from everyday sounds, are no better off. Throughout my advocacy I have met many people, who told me that they just recently got diagnosed with hyperacusis, despite having symptoms for many years or in some cases their whole lives. I have also talked with people who despite experiencing physical pain from everyday sounds, have never even heard of hyperacusis from their medical providers. 

Most doctors, even most audiologists have not even heard of hyperacusis, which means that when they see patients who report pain from everyday sounds, they either don’t know what to diagnose them with or, more often diagnose it as a mental health condition. Children are even more vulnerable to being misdiagnosed as having an emotional disturbance or behavioral problems, because they either have difficulty explaining their symptoms, or are believed to be misusing words when they report physical pain from sounds. Even though getting a diagnosis currently unfortunatly offers patients little protection from harmful sound exposure treatments, at least if it is in the medical record they will be eligible to receive different types of disability services, accommodations, and supports. In the future, as more research comes out, diagnosed patients have a much better chance of being recognized by the medical community having their pain being a result of actual pathological causes. 

In addition to the fact most doctors having never even heard of hyperacusis, those with extremely severe hyperacusis with pain, who don’t have a friend or family member to help them, in some cases aren’t even able to go to see a doctor. This is because doctors offices are loud and often not accommodating to those with hyperacusis symtoms. There are people talking and laughing, TV or music in the waiting room, fax machines, printers, carts rolling, etc. This is not even mentioning the noise in traveling to the appointment. Even calling to schedule the appointment can be a painfully impossible task for someone with extreme hyperacusis. For those who are able to get in to see a doctor, many of them experience severe pain or setbacks and worsening of there hyperacusis as a result of the noise.

In order for more patients to be properly diagnosed two things need to happen. One there needs to be a great increase in public awareness among all medical professionals about hyperacusis. This is where patient advocacy is so important; I am currently working to try to get a proclamation to declare May 3-10th as hyperacusis awareness week. The more doctors who are aware of hyperacusis, the less likely paitents are to be misdiagnosed. The second thing that needs to happen is that medical facilities need to be more accommodating and accessible for people with hyperacusis. This is where adding a Title Six: Teleprescence and High level Sensory modifactions to the ADA is so important. With this amendment, medical facilities would be required to have an option to schedule appointments online or through email, have telehealth appointments its closed captioning and dial-in audio options, have the doctors conduct at home visits, and other accomodations that would make it possible for people with hyperacusis to access care.