One of the most frustrating things about having hyperacusis, in addition to the pain of course, is having doctors not believe me about my pain. Throughout my life, especially when I was younger, I have had so many doctors say that the pain I got from sounds was just an anxiety issue. I have even had doctors who told me that I wasn’t really in that much pain, and was simply being manipulative or had behavioral problems. I remember one neurologist that I saw when I was 9 who said that my hyperacusis was simply “drama.” An audiologist that I saw at age 8 who said that I was simply using my hyperacusis as an excuse, and countless therapists who said that I just needed to “change making thinking about sound and that it was my anxiety that was causing the pain.” Due to their refusal to accept my reports of being in physical pain from sounds seriously, my hyperacusis was treated like a phobia or psychosomatic condition, with sound exposure and behavioral therapy.

I remember when I was 8 being taken to see an occupational therapist twice a week at the hospital for desensitize. In the sessions she would try to have me engage in activities that made noises that caused me pain, in addition to this we had to walk through the loud parking garage and hospital to get there. Once in the room in addition to the sounds that the OT was trying to expose me to, I was often subjected to the sharp painful sounds of hearing other patients in the hallway or other rooms. These sound exposure sessions were painful for me, and did not help my hyperacusis at all. I saw an audiologist a few months later who implemented a program where I was to gradually turn up the volume on my audio books, and start to listen to music and white noise. Turning up the volume on my books was painful and so was the music and white noise. The pain would then linger even after I turned the device off, and the increased pain made all of the other sounds hurt even more. When I was 11 and stayed in a psychiatric hospital, due to attempting suicide to try to escape from the daily pain and disbelief of hyperacusis.Unfortunately these are just two examples and I have many other memories of experiences like these. When I would tell the doctors that sound exposure was making my hyperacusis worse, they did not listen and would insist that my body would eventually over time get used to the noise.

When I was 11 years old, I and had had hyperacusis with pain for about 5 years at the time, I attempted suicide due to my hopelessness and desperation from the pain, and ended up in a psychiatric hospital. They didn’t make any noise accommodations for me during my stay, and I was forced to participate in activities all day with kids who were constantly screaming and banging. I was also exposed to loud music, movies, guitars, vacuum cleaners and much more, despite alerting staff that I was in extreme pain. The two weeks there was the most painful experience of my life so far, my head felt like someone had broken the bones in my skull and my ears felt like they were on fire. I was not allowed to even go in my bedroom to lay down during the day, barely got any sleep at night due to the noise and pain, and had to where hearing protection 24/7 because I didn’t have a quiet place to go. ( The extreme pain only made me feel more suicidal.) The doctors tried to convince my parents that I was not in any physical pain and it was just a behavioral problem. I was discharged with a behavioral plan which involved taking me off of Home & Hospital instruction and  attending school, being near the refrigerator at home, and not going in my soundproof room or closet. 

As I have gotten older I started to do my own medical research, as well use social media to connect with others who have hyperacusis. I found that my experiences with doctors not taking my pain seriously, brushing it off as physiological, and insisting that just gradually expose themselves, were unfortunately not uncommon.  According to a survey by Sanford (CoRDS), “66% of participants experience daily or continuous pain from noise exposure, for 25% the pain lasts between 5 and 24 hours for 28% it lasts days.” According to a research paper published in ENT and auiology news, Volume 27, issue 6, January/February 2019, “An even more significant finding that has historically been neglected is the issue of setbacks from new noise exposures. When asked, ‘how often does the participant have a setback that makes their condition worse?’, 36% indicated at least weekly and only 25% responded with rarely or never. This setback makes the sufferer’s condition ‘moderately worse’ for 50% and ‘worse than it ever was’ for 23%. Figure 3 shows the results for the question, ‘how long does it take for the participant to recover from a setback?” Recovery takes days for 59% and weeks for 24%. Recovery is also proportional to the loudness and/or duration of the impacting noise.” According to Clincal Advancements in Managing Hyperacusis with pain, published in the Hearing Journal, volume 72, issue 10, pages 10-12, October 2019, “A clinically focused question asked: “If you have had a clinical evaluation for your hyperacusis, did the clinician ask you any question related to setbacks?” Only 29 percent reported that the topic of setbacks was covered by their clinician. These results represent critical components that need to be comprehended in clinical evaluations. A patient’s history of setbacks should be considered when determining the best treatment approach and expected outcome. Many patients will likely rank setback prevention and reduction of pain symptoms as their top priorities. For some, perceiving sounds as excessively loud may be a low priority. In summary, the new 2019 brief hyperacusis survey reinforces the primary findings of the extensive Sanford registry. Both surveys suggest that hyperacusis with pain is common among hyperacusis sufferers. Also, many sufferers experience setbacks that temporarily or permanently make their symptoms worse. Therefore, setback prevention should be a top priority of clinical treatment programs.” 

Unfortunately the issue of doctors not believing or taking their patients pain or symptoms seriously is not only a hyperacusis issue. Through my online advocacy and connecting with others in the chronic pain and rare disease community, many of them have been told by doctors that their pain was “in their head.” Up until 2011, fibromyalgia was considered to be a psychosomatic condition, and still today many patients with this condition report not being understood or taken seriously by the medical community. Often those with complex regional pain syndrome, chronic migraines, chronic fatigue syndrome, and most painful conditions are viewed as exaggerating their symptoms of having psychological issues. Many in the rare disease community report doctors not believing them about their symptoms and it often takes many years to even get a diagnosis. 

Doctors need to remember that just because pain is invisible, or a symptom goes against what they learned in medical school doesn’t mean that it is “in their patients head, or that they or making it up.” The medical community needs acknowledge patients as the experts in their own bodies, be ok with admitting that they don’t know everything, and be willing to question what they think they know when it is not in line with their patients experiences.

Works sited:

1. https://www.entandaudiologynews.com/media/14524/entjf19-pollard.pdf

2. https://journals.lww.com/thehearingjournal/Pages/articleviewer.aspx?year=2019&issue=10000&article=00004&type=Fulltext