I was only eight years old when I was formally diagnosed with hyperacusis, although I had been experiencing symptoms for about a year and a half prior. Unfortunately as hyperacusis is such a rare condition and there was so almost no research on pain hyperacusis, meant that I was often not taken seriously. There are so many things that I have had to learn on my own, about the medical side of hyperacusis that I wish I knew when I was younger, so I wanted to share some things that have helped me navigate medical disbelief and misconceptions about hyperacusis.
You Are The Expert In Your Own Body
Let me ask you something. Who do you think knows more about Native American culture, a historian who studied it or an actual Native American who grew up on a reservation? I don’t know about you, but I would listen to the actual Native American over the historian. The same is true with doctors. They might have gone to medical school and have a degree, but they do not live with hyperacusis and have never experienced it for themselves. If the medical advice or treatment that your doctor recommends is worsening your pain and hyperacusis, then listen to your body and do what you know is best for you. Remember ultimately YOU are the only one who is going to have live inside your body and deal with the pain.
Do Your Own Research
Most doctors have never even heard of hyperacusis and those who have mostly still think that it is psychosomatic, and don’t acknowledge the physical pain. One of the most important skills for anyone with hyperacusis is being able to do their own medical research. If you know what you are experiencing in your own body and your doctors refuse to take you seriously, show them the facts or the lack of them. I have been doing my own medical research since I was 11 years old. A good way to start doing medical research is to specifically search for things like “pain hyperacusis” and “hyperacusis setbacks.” Make sure that any facts or research you present to your medical professionals is from a credible source, so that they will take you more seriously. I have found that the best way to go about presenting my research to doctors is write my own research paper, tying together my own personal experience with facts, statistics, and cited medical research. Here are a few medical articles by Hyperacusis Research in medical Journals to get you started: https://www.entandaudiologynews.com/features/audiology-features/post/unravelling-the-mystery-of-hyperacusis-with-pain
Understand That There Is A Lack Of Information
Keep in mind that there is currently very little research done on pain hyperacusis. Whenever there is a lack of information about a condition it gives medical professionals the ability to be able to claim that it is psychosomatic. This puts patients in a difficult situation because they have very little information to use in their defense. Whenever your doctors gives you treatment advice on sound exposure, ask them to show you 3 peer reviewed medical studies in which this was effective for patients with PAIN hyperacusis. If they make any claims about your pain being purely psychological, ask them to show you an article in peer reviewed medical journal that clearly states that there are no physical mechanisms involved with hyperacusis. Hint they won’t be able to find any of this information, because it doesn’t exist! Remember you have the right to question your doctors recommendations or anything they claim as fact! Another thing that I have found helpful is if you are unable to find any medical information that supports what you are experiencing, then find information that can be applied to your situation through logical comparisons. For example research about how fibromyalgia was considered a psychosomatic until 2011, and about how patients with XERODERMA PIGMENTOSUM (sunlight allergy) conditions worsened from exposure. If all else fails, remind your doctor that there are still a lot of things medical science doesn’t know yet, and that you are the one in your body not them.
Everyone’s Body Is Different
Some cancer patients get better with chemotherapy, and others don’t. Some patients with epilepsy are able to be treated with certain medications, for others they don’t work. However for these more common and better understood conditions you less often find doctors saying “even though this is making you worse, it worked for my other patient with your condition so let’s just keep doing it.” Just because a particular treatment helps some people with hyperacusis doesn’t mean that it will have the same affect on you. Everyone’s symptoms and severity is unique and there is no one size fits all approach especially for hyperacusis. Scientists have already identified 5 subtypes of hyperacusis: loudness, annoyance, fear, pain, and vestibular. Even within pain hyperacusis new research is starting to show that there may be at least different types and causes. Remind your doctor of this information when they mention about success they have had with other patients.
About the Creator
I’m a 17 year old writer & advocate for my rare disease, hyperacusis. I love writing poetry, non fiction articles, & short stories on a variety of topics: mermaids, fantasy, emotions experienced throughout human life, sci-fi, fantasy, ect.
Very well written. Keep up the good work!
Heartfelt and relatable
The story invoked strong personal emotions