Tips for Explaining to others about your Hyperacusis needs

As someone who has grown up most of my life with severe hyperacusis with pain, I know how difficult it can be to explain about your condition to new people and get them to provide the necessary accommodations and assistance. Unlike telling someone that you are blind, deaf, autistic, or use a wheelchair, if you say to someone that you have hyperacusis with pain they likely have no idea what that even means. The memories of how dismissive and inconsiderate people have been when we tried to tell them about our hyperacusis needs likely makes you wonder what the point is in even trying if they aren’t going to understand anyway. Although there are unfortunately many people who you can explain about your hyperacusis needs until you are blue in the face and they still won’t understand or care, I have found several methods and strategies that have helped people to understand about my hyperacusis needs and limitations.

Make electronic communication before meeting in person (when possible)

If you know you have an appointment or are going to be meeting someone new send them an email, social media message or text before hand explaining about your hyperacusis. You can make the subject something like medical needs and accommodations. I recommend starting out the email by stating that you have hyperacusis and then explaining what hyperacusis is. I usually say something like: I have severe hyperacusis with pain, a rare, debilitating, under researched and poorly understood medical condition that causes me to experience physical pain from everyday noises. Then I go on to list examples of sounds that cause me pain, the pain sensations and locations, and how hyperacusis prevents me from participating and doing daily life activities. This will help the person understand the severity of your hyperacusis and give them a general idea of your noise threshold, and hopefully make them more empathetic your accommodation requests. I might say something like: sounds such as people talking and laughing, dishes clanging, phones ringing, TV or music playing, refrigerators humming, water running, etc cause me severe stabbing and throbbing pain on my head and ears and lingering migraine attacks. Due to my hyperacusis I am unable to go to stores, restaurants, movies, social gatherings, take showers, cook, listen to music, use a microwave, or go on vacation. Finally after explaining what hyperacusis is, and how it affects you personally explain to the person what accommodations or assistance you will need from them to minimize your pain. This greatly varies depending on the severity of your hyperacusis and the types of interactions and situations you will be in with this person. Some common requests might include but are not limited to: being places in a separate waiting room in a quiet location, people speaking in quiet voices, turning off or muting all electronic devices, etc. 

Advocating in the Moment

We don’t have the opportunity to know in advance every person we are going to meet or predict every situation that we will encounter, to be able to pre-explain about our condition to them unfortunately. This is where a brief attention grabbing explanation of your current needs is important. Say for example that you are with a medical assistant or technician and another staff comes into the room and they start talking and laughing loudly. There are several options for handling in the moment situations like this. You can use body language cues such as putting your finger to your lips or waving your hands around to get their attention. Once you have there attention you can say something like: please lower your voices. I have a rare medical condition called hyperacusis where I get pain from everyday sounds, your speaking volume is physically painful for me. If the person or people seem to be listening and understanding you can take this opportunity to further explain to them about hyperacusis and what your noise needs are. Another good idea if these are people you will be interacting with frequently is to establish hand signal for when it’s too loud that you can use with them.

Have an advocate or representative

Anyone with severe pain hyperacusis knows that no matter how much we plan in advance and try to advocate for ourselves, there are often times when the physical pain, and additional symptoms make it impossible at that moment. Other times a place my have loud music on there waiting line or no way or other noise barriers that prevent you from being able to explain about you hyperacusis needs. This is where having a friend or family member who knows you well and understands about your hyperacusis, with you when you are going into new or unpredictable environments, can be extremely helpful. This person can do things like but not limited to: go into waiting rooms and ask them to get you a room in the back while you wait outside or in the car, ask people to quiet down when you are in too much pain to do so, help you navigate when the environment is noisy and you are confused due to severe pain, etc. If you have someone that you live with who understands you hyperacusis and helps you with daily life activities, they would be a good person to go with you to such places. If you unfortunately don’t have any friends or family who are understanding about your hyperacusis and willing to help, and you also struggle with daily life activities as a result of you hyperacusis, consider researching your state’s departments of human services, disability services, Medicaid, and developmental disability services to see about applying for a home aid or attendant care assistant.