The struggles those with hyperacusis face
I remember one conversation I had at work with a co-worker. The gentleman was trying to understand my disability. They all knew at times I couldn't hear them and that it was hard for me to distinguish what direction a sound was coming from. It became a frequent joke at work.
Someone would call out to me at times it would take two, three times before I would hear them or if I did hear them I couldn't figure out where they were. Each time I would turn and look it was in the wrong direction because that's where my mind perceived it to be coming from.
Once they called out again it all changed even more. It took me a good three to four times. Not all the time it was worse the further away someone was calling to me. If someone was more than 12 feet away it well, was a very confusing situation for me.
You must also take into account the tone in a person voice; if they speaking normal or loud as if trying to get my attention. One woman would always wave her arm when she called out to me in order to get my attention. She understood it was difficult for me.
As I told to this gentleman about most of my hearing being okay, he didn't understand what was wrong. So I explained about the tinnitus being 24/7, not getting sleep, and dealing with everyday life and hyperacusis on top of that.
Picture this...
You approach me knowing I'm not going to hear everything you say or comprehend it all with the background sounds being amplified to me and causing me discomfort and pain. You start talking to me and you find me looking at your lips not your eyes.
Clue #1 I'm having a hard time focusing on just what you're saying because there may be music playing, other workers talking, customers about, hangers clanging, something printing, people walking, doors opening and shutting with a beep each time, a laugh out of nowhere, a plastic bag, a drawer opening, the heating system on and more.
All these everyday sounds are amplified to me and here you want to talk with me. It doesn't matter that you're standing 12 inches or 6 inches away. Everything else is already in my head it's like information overload and your voice is one more thing trying to get in there.
Clue #2 I'm blinking a lot or looking away and trying to refocus. Mental confusion from the hyperacusis has set in. My head is feeling like it's filling with fog, I feel dizzy yet still not wanting to be rude and a bit sad and angry that this is happy, I stand there trying with all my might to really pay attention to what you are saying to me. And in my mind I'm thinking, 'Damn it Wendy you can do this'.
You make comments like, 'You hearing the ringing right now?' I reply, 'Yes, it's there 24/7.' You ask, 'How do you deal with it?' Again I reply, 'I try not to think about it, that's why I work, it keeps my mind busy.' You respond, 'There's no way I'd be here if I had to deal with that!' My reply, 'I don't have a choice, I'm a single parent and my hearing doesn't fall under the range for disability.' You remark, 'That's bullshit!'
Whether I like it or not I have to work, if not the tinnitus flares up even more. The hard part is dealing with all the noise that causes me pain. On a good day I manage to keep my sanity leave at the end of my day not wanting to hear a single sound for the rest of the night. I'm exhausted from pain and confusion in my head and bout of vertigo hitting me on and off through the day.
On a bad day, I leave early, irritable, in so much pain I want to shut the world out and just get '5 minutes peace' I've been nauseous all day, almost fainted several times and felt like the world is on a merry go around. I go home have a good cry.. and seclude myself from everything possible, take an advil for the migraine, another vertigo pill, drink lots of water and rest.
I even had one person tell me they had a family member who had hyperacusis and that I react to it much different than their family member. My reply was, 'Not all people with hyperacusis have the same symptoms or react to them the same way.' They kept telling me, 'If I felt I couldn't work I needed to talk to someone and even file for disability.'
That upset me! My reply was, 'I think I have proven I am more than capable of working if only the right accommodations were put into place.' I was so taken back by their comment about the family member and the notion that all people with hyperacusis and tinnitus had to be so crippled by it that they were on medication, depressed and locked away from the world in pain.
I'm not a person who would or even could pop 50 pills for pain, sleep, depression, anxiety the list goes on. I have a history of allergic reactions to medication so for them to even suggest that I couldn't possibly have hyperacusis along with my tinnitus was just so disrespectful of them and ignorant to the knowledge out there. In fact my doctor wrote on my paper I had hyperacusis and their reply was, 'It does say you have sensitivity to sounds.'
Definition of hyperacusus:
Hyperacusis (also spelled hyperacousis) is a health condition characterized by an over-sensitivity to certain frequency and volume ranges of sound (a collapsed tolerance to usual environmental sound). A person with severe hyperacusis has difficulty tolerating everyday sounds, some of which may seem unpleasantly or painfully loud to that person but not to others.
source: http://en.wikipedia.org/wiki/Hyperacusis
Now for this person to have a family member who has it yet to suggest I do not and they don't know the definition of the disability. If I wasn't a better person I'd want to their job for how they were treating me.
However my focus in all this is 'ME' getting me better, learning to cope and have a happy healthy life. All this person did was show me how ignorant the world is to the disability and made me more determined to spread awareness of just how crippling tinnitus and hyperacusis can be even for someone as driven, determined and unwilling to give up as me.
I'm very thankful for the Hyperacusis Support Group I am a member of. .Everyone is warm and welcoming. They are who I socialize with the most. Work now limits me to one person contacts, I have my children who have been so understanding, supportive and helpful, my mom the one person I will pick up a phone for and be in pain to hear her voice, a few close friends who always text me... and that special someone in my life. I really can't handle any more than that... try as I may...
I know my limits and my biggest fear is causing more damage. I've become phonophobic as well...
Definition of phonophobia:
Phonophobia (from Greek φωνή - phōnē, "sound"[1] and φόβος - phobos, "fear",[2] also called ligyrophobia or sonophobia) is a fear of loud sounds. It can also mean a fear of voices, or a fear of one's own voice.[3] It is a very rare phobia which is often the symptom of hyperacusis.
source: http://en.wikipedia.org/wiki/Phonophobia
I stay off the phone... and don't frequent outings to stores unless a MUST! My girls do a lot of that for me just because the cold weather has caused me great pain. Restaurants make me feel incompetent and a lot of everyday fun stuff I did all the time, I don't do now.
A post on the support group I wrote:
And then there is the issue the moment you do one thing that is remotely normal, people swear you can't possibly have this condition. God for bit we try to gain a piece of our life back that was ripped away from us.
Someone would call out to me at times it would take two, three times before I would hear them or if I did hear them I couldn't figure out where they were. Each time I would turn and look it was in the wrong direction because that's where my mind perceived it to be coming from.
Once they called out again it all changed even more. It took me a good three to four times. Not all the time it was worse the further away someone was calling to me. If someone was more than 12 feet away it well, was a very confusing situation for me.
You must also take into account the tone in a person voice; if they speaking normal or loud as if trying to get my attention. One woman would always wave her arm when she called out to me in order to get my attention. She understood it was difficult for me.
As I told to this gentleman about most of my hearing being okay, he didn't understand what was wrong. So I explained about the tinnitus being 24/7, not getting sleep, and dealing with everyday life and hyperacusis on top of that.
Picture this...
You approach me knowing I'm not going to hear everything you say or comprehend it all with the background sounds being amplified to me and causing me discomfort and pain. You start talking to me and you find me looking at your lips not your eyes.
Clue #1 I'm having a hard time focusing on just what you're saying because there may be music playing, other workers talking, customers about, hangers clanging, something printing, people walking, doors opening and shutting with a beep each time, a laugh out of nowhere, a plastic bag, a drawer opening, the heating system on and more.
All these everyday sounds are amplified to me and here you want to talk with me. It doesn't matter that you're standing 12 inches or 6 inches away. Everything else is already in my head it's like information overload and your voice is one more thing trying to get in there.
Clue #2 I'm blinking a lot or looking away and trying to refocus. Mental confusion from the hyperacusis has set in. My head is feeling like it's filling with fog, I feel dizzy yet still not wanting to be rude and a bit sad and angry that this is happy, I stand there trying with all my might to really pay attention to what you are saying to me. And in my mind I'm thinking, 'Damn it Wendy you can do this'.
You make comments like, 'You hearing the ringing right now?' I reply, 'Yes, it's there 24/7.' You ask, 'How do you deal with it?' Again I reply, 'I try not to think about it, that's why I work, it keeps my mind busy.' You respond, 'There's no way I'd be here if I had to deal with that!' My reply, 'I don't have a choice, I'm a single parent and my hearing doesn't fall under the range for disability.' You remark, 'That's bullshit!'
Whether I like it or not I have to work, if not the tinnitus flares up even more. The hard part is dealing with all the noise that causes me pain. On a good day I manage to keep my sanity leave at the end of my day not wanting to hear a single sound for the rest of the night. I'm exhausted from pain and confusion in my head and bout of vertigo hitting me on and off through the day.
On a bad day, I leave early, irritable, in so much pain I want to shut the world out and just get '5 minutes peace' I've been nauseous all day, almost fainted several times and felt like the world is on a merry go around. I go home have a good cry.. and seclude myself from everything possible, take an advil for the migraine, another vertigo pill, drink lots of water and rest.
I even had one person tell me they had a family member who had hyperacusis and that I react to it much different than their family member. My reply was, 'Not all people with hyperacusis have the same symptoms or react to them the same way.' They kept telling me, 'If I felt I couldn't work I needed to talk to someone and even file for disability.'
That upset me! My reply was, 'I think I have proven I am more than capable of working if only the right accommodations were put into place.' I was so taken back by their comment about the family member and the notion that all people with hyperacusis and tinnitus had to be so crippled by it that they were on medication, depressed and locked away from the world in pain.
I'm not a person who would or even could pop 50 pills for pain, sleep, depression, anxiety the list goes on. I have a history of allergic reactions to medication so for them to even suggest that I couldn't possibly have hyperacusis along with my tinnitus was just so disrespectful of them and ignorant to the knowledge out there. In fact my doctor wrote on my paper I had hyperacusis and their reply was, 'It does say you have sensitivity to sounds.'
Definition of hyperacusus:
Hyperacusis (also spelled hyperacousis) is a health condition characterized by an over-sensitivity to certain frequency and volume ranges of sound (a collapsed tolerance to usual environmental sound). A person with severe hyperacusis has difficulty tolerating everyday sounds, some of which may seem unpleasantly or painfully loud to that person but not to others.
source: http://en.wikipedia.org/wiki/Hyperacusis
Now for this person to have a family member who has it yet to suggest I do not and they don't know the definition of the disability. If I wasn't a better person I'd want to their job for how they were treating me.
However my focus in all this is 'ME' getting me better, learning to cope and have a happy healthy life. All this person did was show me how ignorant the world is to the disability and made me more determined to spread awareness of just how crippling tinnitus and hyperacusis can be even for someone as driven, determined and unwilling to give up as me.
I'm very thankful for the Hyperacusis Support Group I am a member of. .Everyone is warm and welcoming. They are who I socialize with the most. Work now limits me to one person contacts, I have my children who have been so understanding, supportive and helpful, my mom the one person I will pick up a phone for and be in pain to hear her voice, a few close friends who always text me... and that special someone in my life. I really can't handle any more than that... try as I may...
I know my limits and my biggest fear is causing more damage. I've become phonophobic as well...
Definition of phonophobia:
Phonophobia (from Greek φωνή - phōnē, "sound"[1] and φόβος - phobos, "fear",[2] also called ligyrophobia or sonophobia) is a fear of loud sounds. It can also mean a fear of voices, or a fear of one's own voice.[3] It is a very rare phobia which is often the symptom of hyperacusis.
source: http://en.wikipedia.org/wiki/Phonophobia
I stay off the phone... and don't frequent outings to stores unless a MUST! My girls do a lot of that for me just because the cold weather has caused me great pain. Restaurants make me feel incompetent and a lot of everyday fun stuff I did all the time, I don't do now.
A post on the support group I wrote:
Restaurant kill me it's when I feel the most incompetent..I need the ear plugs for the noise and pain, yet mental confusion sets in from all the noise and I can't even hear the person I'm with. It leaves me feeling like my independence has been ripped away from me and I just want to cry and leave..every time.. I don't go out much anymore.
And then there is the issue the moment you do one thing that is remotely normal, people swear you can't possibly have this condition. God for bit we try to gain a piece of our life back that was ripped away from us.
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