Suffering in Silence
I have been given the privilege to talk once again with someone suffering from this non-visible disorder. Today I share with you a story about a man who has been suffering in silence with hyperacusis since 2009.
Our story comes from the east coast of the United States, in the state of New Hampshire. The man’s name will be Mr. Silence because life can be difficult for those with hyperacusis; this article is meant to spread awareness of the disorder not to cause someone suffering, more difficult times.
So many people with this disorder have been mistreated not only by the public, but also by doctors, co-workers, friends and loved ones. We recently did a poll to find out just how many people knew what hyperacusis was.
I walked up to ten random people on the street and not one could tell me what hyperacusis is, most commented with “I never heard of it” or “I didn’t know there even was such a thing”.
“It changed my life completely, overnight. I usually don’t talk much about my illness because I don’t want to be a hindrance on anyone, plus nobody truly understands what it is we ‘hear’ and ‘feel’ so it’s like speaking another language“, Mr. Silence tells me.
Hyperacusis is classified as a disorder, which is sensitivity to everyday sounds. Though this disorder can be debilitating, cause those who suffer to lose their job and even end relationships, it is not considered a disability because there is no physical handicap.
Should such a disorder be classified as a disability? That’s the big question. The conflict lies with no one really knowing what it is, how to treat it and no known cure.
Mr. Silence went on to tell me he joined a hyperacusis support group a couple years ago but he never posts himself. “Call it shyness, I guess it’s just nice to read others stories because it lets me know I’m not alone. And to be honest I feel alone quite often because of my illness.”
Many people with this disorder find themselves isolated from the world. Things that they once did in everyday life, now causes them pain. It can be difficult to go out in public with honking horns, squeaky brakes, emergency vehicles passing; construction work on the nearest corner even sitting in a restaurant can be painful and overwhelming. It seems the world has become very loud.
Hyperacusis is different for everyone; there is no one way of getting it. Mr. Silence was first diagnosed with Ramsey Hunt Syndrome, which then triggered other conditions like his hyperacusis. “The nerves in the left side of my face are all dead for lack of a better word”.
Many patients with hyperacusis go to the doctors and end up on some form of medication. There are numerous ways of getting hyperacusis. Some may get it from another condition, working in a loud environment or even a simply surgery.
The medication is usually prescribed for the anxiety of which they feel, pain, depression, even help with sleeping. However, none of these medications is prescribed for the hyperacusis itself.
When I asked Mr. Silence about his specific case he stated, “I refuse to take painkillers because I don’t like narcotics and how they make you feel. That’s not living to me, being drugged all day every day. I would rather wake up fully aware and in pain than not know where I am half the time.”
In a separate article we covered early this year, we talked about how difficult even the support groups can be as members feel like they have to defend their illness to people who have it themselves.
Venting is an important part of coping and healing but not if it is done in the wrong way. “In groups it sometimes turns into a competition of which feels the worst, had the most procedures and so on. Everyone is entitled to their opinions but not every post should be like that. I just believe that we are all dealt situations in life, and how we handle them defines who we are”, Mr. Silence stated.
Tips for Venting on Support Group Pages in a More Positive Way
- Share one positive experience with each negative experience you feel you need to vent about, this way you end your thoughts with a positive emotion.
- Keep comments on another person’s post about him or her not you. Remember that is their space to vent and you are there to be supportive.
- Never reflect another person’s post to your own situation unless you are asked.
- If you want to question something, someone has written do it in a p.m. not right out on the group page. Remember a support group is there to “support members” not to attack them and question everything one says.
- Try to remember what works for you may not work for another’s, that doesn’t make it wrong. A lot of times with simply questions it suddenly gets out of hand because sides are drawn.
One of the hardest things for people with hyperacusis is connecting with others, “It’s not easy for people like us to keep going all day every day, especially when there’s nobody to relate to at the end of the day”.
We all feel like that, don’t we? At the end of the day you want to be around someone who gets you, what you go through, how you feel. It’s a nice feeling looking across the table at dinner and knowing that person understands you. On the other hand, going out and do something with friends, family, that special someone can be an enjoyable moment, time to relax.
Let’s try to remember with new conditions and disorders these people are very much alone and they count on those who were in their life before they were diagnosed to still be there. What would you do or say if suddenly you were unable to do something you did every day?
Thank you for reading; I hope you found this interview informative and helpful. Feel free to leave a comment I always enjoy hearing from my readers.