@LindaS This is a really good post to describe the biggest problem with hyperacusis (how misunderstood it is by those who don't suffer from it). I always find myself thinking of ways to really describe what hyperacusis is like to live with. I don't want to down play ANY illness but I have thought so many times what I would swap my hyperacusis for. I'd swap my hyperacusis for my legs, my arms, (more than likely both arms and legs), Id swap it for cancer if there was a reasonable amount of time left to cram in some good living, HIV, my eyesight, there's not much I'd would not trade it for. Even things like poverty, losing all my material possessions, being placed in a war torn country, basically anything except the loss of a loved one (or any life for that matter).
I lost everything except the ones I love with hyperacusis, it's not comparable to any other illness. The closest I can get to comparing it with anything else, is that it's almost like a 'fully awake locked-in syndrome'. You can view life through a big glass window but you can't take part in it, and as soon as you try to, you get shocked back to reality in pain. Life is now either one of 2 things for me, excruciating pain accompanied with fear and anxiety and the need to protect at all costs not to make it even worse, or, when pain eventually subsides it becomes a soul destroyingly boring existence full of recurring nightmares by night about what life was like before and crushing flashbacks by day to all kinds of times in my life (mostly school days) to when there was so much joy and optimism in life. I can't believe sometimes what my life has become. I can / (have no choice but to) spend days hunched over a laptop just flicking between Facebook (which I never post on unless it's an hyperacusis group), a couple of news sites, and here just hoping for updates. It's so truly shit.
I have a good friend who has a generally successful but ongoing battle with cancer and again I don't want to play down cancer AT ALL, but there is still a lot of hope and life to live even with something like cancer. I have never had cancer, but from what I see, it is a challenge, a battle, and a reason to fight to live. It can be defeated. There is no hope with hyperacusis, there is no fight, it wins every time if you dare even try, and there is no proper regard among the medical profession as to how awful it is, there is no support system for it, you're on your own. A doctor once asked me what my symptoms were so I said the classic, 'I can't handle clinking dishes any more', so he laughs and says at least you get out of the washing up. It's like saying to a cancer patient about to undergo chemo, at least you'll save some money on shampoo, or telling a newly paralyzed person, at least you've got an excuse not to get out of bed now. Hyperacusis is like a joke, even to the medical profession when it should be treated like a life changing condition such as cancer or paralysis.
What scares me so much about hyperacusis is that it is so unsupported and is such a frightening place to be because of this. When I got hyperacusis I did not know what to do for a very long time, I instantly faded away from all friend groups I had and disappeared off the map. Still years on, only 6 of the people closest to me know about my condition, and they all, to varying degrees still don't get what it means to be careful when around me. This group of people try their the hardest so I can only imagine what it would be like for my other friends to know about this and still be around, it would never work. All my old friend groups are generally noisy, into music, going out, generally larking about and living life to the full so what use is any of that to me now. Music was my life, for the first few years I kept my instruments and music gear but now I have sold everything because it was either hurting me because I couldn't resist using it or it was killing me to look at it.
I'm terrified of ever ending up in an uncontrollable situation such as a war zone, a riot, a police cell, an overcrowded hospital, a mental ward, a fight, the need to HAVE to take a very ototoxic medication for another condition etc., something that you just can't get away from. I would be screwed. Any visibly disabled person would at least not have the instant crippling pain from the noise, but also would have people recognizing their condition and trying to help them out like for example, wheelchair bound, cerebral palsy, amputee, downs, blind, even deaf/mute with hearing aids. But I already know that no-one could accommodate someone suffering with hyperacusis, you'd already have had a massive set back by the time you'd tried to explain your condition to someone, (It's almost worth considering cutting off one of my legs so that I now at least look disabled). Hence the reason I only feel safe now on my own or with a very few trusted people around. It is so hard to accept that this is probably for life now. Regen meds start to give me less and less hope for hyperacusis because hyperacusis just does not seem to fit under the umbrella of what those meds are trying to fix, as much as I'd like to believe they will help in some way.
I have thought about suicide many times over the years and personally certain drugs I've been prescribed have not helped my mind set one bit in this regard so I never take them now, even if I'm in pain, so once again, hyperacusis wins and must be tackled in isolation and without any medical help in my case, the only thing I have is the hope of keeping a strong mind. I doubt I could ever commit suicide anyway as I have people in my life and in particular someone depending on me who means so much to me regardless of my pain, and as useless as my life is to me, it is not useless to them. Just because I wouldn't do it though it does not mean that I don't spend a very unhealthy amount of time thinking about it.
I wish and pray more than anything that the reality of this condition can be finally understood and acknowledged by the doctors (URGENTLY!) and exposed for the hell that it is, and that something can be done to give us a life back or at least some proper support.
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Nothing seems to work.
