It's Not Fair

It's not fair that we have to live with Tinnitus, and the rare Hyperacusis, both conditions are very detrimental at any level. The afflictions are not researched enough from lack of funding, so there is no cure, or no manageability (yet). The patient has to go through so much just to get by every single day, and not a single soul understands, but us. They say that you need to live in the patient's shoes to really get it, and this goes with anything. When asked by family or friend's how we are doing, sometimes we may need to lie, and say that we are doing "alright", when really and truly we would like to say, that we are doing "absolute garbage". In my experiences, I have told people in my circle, that I am tired, can't do this anymore, need help etc. When this happens, I get "Well it's like any other health condition, take a pill, and manage yourself better", or they will stop talking to me all together, so sometimes, I need to lie to keep relationships. Well taking that pill, as they told me to do, has made me worse, unfortunately. I tell people what I need to manage, by living in my own quiet residence, with support around me, to help me do things, barely anyone believes me. Many people will gaslight, and tell me to "stay positive", "Oh it will go away one day", "Just don't focus on it" etc. Well let me tell you, if these people were in my shoes, they would be doing the same things I am doing, reaching out for help, and support, they may even be worse than I am. The isolation is terrible, sitting alone in a four cornered bedroom, wearing protective ear muffs all day, and ear plugs at night to sleep. My ears have not had much breath in the last seven years, and it's not healthy at all, in any regard. I do anything though, to protect myself from sound, it is everywhere. Roommates talking on the phone, thank god they don't use the speaker function, artificial audio is one of my worst triggers. Neighbours outside of my bedroom window playing on the streets, people working on their cars, mowing lawns and more. Sound is just everywhere, you cannot escape it, it's like being allergic to air, I quote a fellow sufferer who says this, and it is true. 

It's not fair, that ninety percent of doctors gaslight us as well, when we see them. When we go to the hospital, most don't take us serious I find. I have told hospital nurses and staff, that I need a room to wait in by myself, as I am disabled with Hyperacusis... then I get... "What is that sir?", then I need to explain Hyperacusis to them, and that becomes stressful. Some of them will listen, some won't. I Remember having surgery in 2023 in a Toronto hospital, they gave me my own room, thank goodness, but the they gave me a room beside construction going on. I could not sleep, even on the some of the best pain meds in the world. My heart was racing, I was always in fight or flight mode, even more than I already am. I was supposed to be in the hospital for two days, and they extended it to four days, as they could not grasp why my blood pressure was so high, and my heart rate was way up. I had said to them, it is because of my Hyperacusis disability. They brought in a cardiologist, and nothing was wrong. They prescribed me a medication to slow down my blood pressure, I didn't even take it, as I know most meds make my conditions worse. That's the reason I had surgery, as meds were making my Hyperacusis & Tinnitus terrible to begin with, so I needed to go under the knife to control, what was going on with me, another health condition I have. 

It's not fair that other Hyperacusis & Tinnitus sufferers can gaslight us - "Well Tinnitus Retraining Therapy worked for me, and so many others, you just like being sick, and will not do anything about it", "Suck it up buddy, be grateful you are not severe like me, stop complaining" etc. Anyone, and I mean anyone with these conditions, at any level. Mild, Moderate, Severe and Catastrophic are allowed to voice themselves, and should get nothing but empathy and love from fellow sufferers. Seven years ago when I was mild, I tried to take my life. So people really need to be careful about what they say, in my opinion. 

It's not fair we have to sit holidays out. Christmas, Birthdays, Easter, and cannot even attend funerals. Hyperacusis and tinnitus have got be some of the most horrid health conditions, on planet earth. They strip you of everything, they strip you of who you were when healthy, take away friendships, and relationships, the list goes on. 

I come to you today, writing this on Easter, the day Jesus Christ rose from the dead. I feel like I have been called to tell this story. To be perfectly honest, the only thing that helps me to get by everyday, other than hearing protection is God, if I did not have a spiritual life, I may not be writing this right now. So I give my will and my life, over to a higher power, every single day. I feel that God is the one who has the plan for me to keep raising awareness, to have some kind of purpose in the pain. 

It's not fair, that we have to endure such pain & torture, and have ninety percent of the world not understand us. Its not fair, that we have no treatment available yet, to get better, to be able to live normal hearing lives again, or to just have some reduction. 

By: David Vance