How important it is to have family & friend's support, hyperacusis & tinnitus. Testimonials from patients

 

This piece is being created, simply because we as severe Hyperacusis & Tinnitus sufferers need help to do everyday normal things. Just today, I have had to cook, in which the pans hurts my ears, the washing of dishes, the crackling sounds of frying etc. Going out to get a Couple of essentials because ordering in is to costly on a single disability budget, showering hurts from the water, the bath etc. The running water causes increased tinnitus in my whole head and ears, and it from running slightly as well. I wear over the head ear muffs, and ear plugs while doing so, and it still hurts. Living alone, and with roommates because cost of rent is to high in Ontario, with these conditions is just not do-able. People constantly showering and the sounds piercing my head and ears, cooking, getting up in the middle of the night, walking to hard on the floors, phone calls, watching TV. Also needing the emotional support, from family, friend's and loved ones, to be able to get through each day is vital. For me personally, I have been doing this for 7.5 years now, and it is way to hard, I am at the point of tears every single day now, I simply cannot do it anymore . I used to be extroverted having normal hearing, and now having severe hyperacusis and tinnitus, I am locked in as a prisoner, constantly in pain, feeling suicidal every single day, and no physical body is around for me to turn to, because nobody understands me /  us! 

I have gathered some hyperacusis & tinnitus patient testimonials together to show, that some physical support is needed no matter what, in order to not worsen, to try to not worsen, to SURVIVE! For me, I have worsened dramatically over the years from pushing through the pain, and being around roomates. Simply patients cannot do it without physical family / friend's support, it's not humanly possible, and our loved ones need to really understand this.

TESTIMONIALS

JENNIFER MORROW 

People with severe Hyperacusis and Tinnitus deal with issues that are not survivable alone. We need help and support from family and friends. It’s not simply a matter of putting on ear muffs and/or ear plugs and being able to successfully take care of myself every day. My family has helped me locate a quieter place to live and also helped financially. My spouse and adult son help with shopping and errands, as I’m unable to drive. Also, my spouse preps and cooks meals. When even quiet sounds are loud and painful and set off Tinnitus, caring for a home is almost impossible if you live alone. There are medical issues that can go along with my hearing issues, such as; head, neck and face pain, all over body pain, light sensitivity and vision problems. In my case, I need a family member or friend to help with phone calls, as I can’t tolerate the digital sound of the other person‘s voice. Just imagine, for a second, not being able to use your phone without experiencing extreme pain and a setback. I have some of the challenges of a hearing impaired person, but often not the social recognition or empathy. I can’t work anymore because of my severe Hyperacusis and Tinnitus, so financial help from my extended family has been a lifesaver. We need the seriousness of our hearing damage to be acknowledged and we need help from family and friends or some of us might not make it.

KELLY WEAVER 

Having a chronic illness is life changing, having a RARE chronic illness is life changing and extremely lonely. Having Hyperacusis is that rare debilitating chronic illness that strips you of everything including your independence. Hyperacusis sufferers need support and help with so many basic life needs. Phone calls are so difficult for us, cooking, driving or getting around, drs appts are a nightmare, going to a store to get things we need, working……everything a healthy person does without even flinching is almost impossible for us. We need help and we don’t need to feel like a burden when we need that help. Nobody wants their independence stripped from them, it’s the worst feeling to have to live with. We didn’t ask for this and we do the best we can but at some point we will need help. I am very blessed to have a husband that helps. I can’t even start the shower on my own even with ear protection because it’s too loud so he starts it for me. Can you imaging not even being able to do something so basic? It’s belittling! 

Having a healthy support system is so important and a major part of the mental and functional aspects of Hyperacusis. Not having that healthy support system when you need it is mentally and physically draining and can lead to depression and other mental health disorders. It’s hard enough to have a debilitating rare condition but to be left alone to fight that battle with no help is absolutely brutal. Hyperacusis takes a VILLAGE! Support your loved ones if they are suffering with this condition, show them love and empathy and most importantly understanding. They need you, they need to know that they still matter and that people still care. They need to know that help is just a text or phone call away.  Imagine if the tables were turned? How would you want to be treated? 

A lot of rare diseases or conditions have very little resources or advocates, or drs that know much about them...we are left on our own a lot. We have to figure things out as we go. Please don’t make this journey even harder for your loved one. Help them, help them to survive this. Help them navigate through this nightmare and have some quality of life. Show love and support and be a safe place for them, let them know that their life still has value and they are not a burden. They are going through things you couldn’t even imagine and life has been flipped upside down for them. This isn’t a scenario for tough love…..this is a scenario that requires pure compassion.

KATHY MCCAIN

I have severe and debilitating Hyperacusis and tinnitus. I don’t live alone and am very blessed to have my spouse who is now retired.  I can not fathom how anyone who has severe auditory issues like this could live alone. It is mandatory for one to have a support system.  Errands doctor appointments grocery shopping my husband does it all. Moral support is extremely important as well. One feels out of the loop and invisible.

J.D. RIDER

Hyperacusis requires understanding and support from a patient's family and friends. That can honestly make or break a patient's ability to survive. When their symptoms are severe, even the simplest tasks are almost impossible to do. Depending on the task, others need to understand why it is that the patient is either not doing it or needing help. In many cases, we can link the patients who didn't survive to the presence of insensitive families whose lack of belief or support for their health condition enabled their undoing. The reason this happens is because a family who doesn't accommodate a patient subjects the patient to harmful noise that worsens their condition to a level where it almost isn't survivable anymore, or doesn't help with the needed aid of other basic necessities to allow their survival. These folks are incapacitated in the most inhumane ways--some so much you might call it incompatibility with life rather than being disabled (i.e., when they can't even brush their teeth or bathe anymore)--and they need respect like any person facing extreme illness does.

BIJAL PATEL

I have tried all the usual therapies of cognitive behavioral therpay, Tinnitus Retraining Therapy, and can confirm this condition is not psychological, if it was I would be cured by now or improved.

I have a 6 year old child, and a husband. I DO NOT CHOOSE TO LIVE LIKE THIS, I HAVE NO OTHER CHOICE BUT TO STAY IN QUIET TO SURVIVE.

SARAH O'BRIEN

Out of all of the multiple health conditions that ail me, severe tinnitus, for me, would be put at the absolute top, being the worst. Why? There's no escaping it. No magic pill to bring down the volume, no magic pill to stop the pain. I have a pure tone frequency in my head, blasting out of my ears at such a high volume-- I'm not sure how other people can't hear it. I enjoyed life, but for the last 3 years, every day has been survival and a fight against suicidal thoughts. Everywhere I go, it's there... The magnitude of distress and depression it causes on a daily basis is unbelievable. By God's grace have I gotten this far and maintaining for my family. I can be "productive" some days, but I am white knuckling it every second that I am awake. The only relief is sleep, and even then that is difficult to come by without heavy aid. From eyes open to eyes shut, this torture prevails. I don't know how I could have managed without the support of my friends and family

SIOBHAN FARRELL

Since I got hyperacusis, I have been fortunate that many people I know have been supportive, which has been crucial. As my hyperacusis worsened and I became homebound, my soccial contact dramtically decreased. Over time, even having conversations caused setbacks. So I saw people, even family much less frequently, and now I can no longer attend family dinners, and other kinds of celebrations. I have trouble making phone calls, as I cannot tolerate digital audio. Even having home visists like the internet technician last week are challenges. Living alone means doing things, which you know are going to cause setbacks. 

In terms of family, I have two siblings, a siter who has always been wrapped up in her own life, so I don't hear from her. Luckily, I have a wonderful brother who stays in touch frequntly. He is in another city, and because I can't fly, I have not seen him for three years. My two daughters live in my city, and are incredibly supportive, and I would love to see them more often. 

I would, however love to hear from my friends more often. Over time, becasue I see people so infrequently, even my close friends reach out less often. I know they still care about me, but I am no longer in their world. I have become the one most likely to reach out, and contact them. But then communication becomes more one-sided, which is sad, and makes my world a lot smaller. They sometimes do errands for me, but I hate to ask as they are just simple things, like picking up a package at the postal office. Living with this condition is very hard, but the support I do have keeps me going.