When dealing with a chronic illness such as Noxacusis (Pain Hyperacusis), Hyperacusis & Tinnitus, it’s difficult for the sufferer to everyday manage. Some severe cases are stuck within a 4 wall bedroom 24/7, cannot leave and just watch the world pass by through a window.
Not to mention that Hyperacusis & Tinnitus is not even really known at all, research is not nearly as complete for a cure to surface anytime soon, so they say. Barely any of the right information is out on the condition for others who are not suffering to get educated on. Most of the information spread across the internet from Doctors & Audiologists does not apply for many cases. The infamous sound therapy promoted, is not proven to help pain Hyperacusis & Reactive Tinnitus, in fact statistics show that this therapy actually worsens most cases. So information from professionals is not even helpful for some. Some family, friends and loved ones can accuse the sufferer for not trying the promoted therapies, and expressing to the sufferer that they don’t even want to get better, as there is treatment available. But who in there right mind would want to sit in a bedroom with hearing protection on, and not want to live, it doesn’t make sense. The thing is there is no curable treatment yet.
This is why people need to listen to the patient, Michael J. Fox quotes and recites it best, that the patient is the one going through the illness, so the patient is the one who needs to be listened too.
Many are not listening to the needs of people suffering and would rather offer their own advice, this even goes for some Physicians / Professionals.
But most importantly some patients all they are really asking for is loving support from family, friends, loved ones, people around them. Some people listen and some don’t, and this is what needs to change, for those who don't listen.
With Hyperacusis & Tinnitus whether at a severe, moderate or mild level, it is exceedingly detrimental, and to not be able to do everyday normal things because everyday simple noise hurts the person is a serious tragedy, and not something to be ignored. A simple text every now and then asking if someone is okay, if they need anything that they are able to give / offer etc. can go a long way, and can avoid more mental suffering.
Mental health is important for everyone, and especially for people with Chronic Illnesses, and what I am talking about in this very article : Hyperacusis & Tinnitus. Maintaining a positive attitude is hard, even just keeping the head above water is hard for some. It’s not easy to pull out of a depressive state, it’s not easy to alleviate severe anxiety, it’s not easy to simply smile some days. So in fact it should be “Human Decency” for others to be respectable, and to offer empathy, compassion and support to their loved ones while facing health battles, especially for illnesses that are non curable, and invisible like Hyperacusis & Tinnitus.
It’s sad to say, but even people with Cancer, Parkinson’s etc get more love and support than people with invisible illnesses, and this also needs to change. It does't matter if the illness is physical or invisible, both can be very detrimental.
With Hyperacusis & Tinnitus some cannot leave their bedroom, the sounds of the running water hurts, the sounds of opening a bag of chips, opening a door, someone talking, a barking dog causes piercing aching, burning, stabbing and shooting pain. Not being able to leave the house because of motors, traffic, sirens, planes etc - and this lasts for forever for some people, it does not go away.
Imagine being alone sitting in a room within four walls, wishing you could just live a little, and it’s not even your fault why you have the illness, just plain bad luck. Sometimes people get told that they are a burden, and that they are guilt tripping their loved ones when asking for support, when in fact all they are looking for is simple “Loving Support”. A text every other day or a couple of times a week to say “Hi”, a text to say “Are you okay” goes a hell of a long way, and nobody and I mean nobody is ever too busy to make such a simple task happen, and if they say that they cannot, it’s an excuse in my opinion, and cruelty.
Everyone deserves to be treated with love, kindness, compassion and respect. Everyone!.
Thank you for listening, so much love.
David Vance.
