Specialist Lack of Help and Inconsiderate Family

I know I've mentioned this before. Right after my visit with the ENT and Audiologist. But the lack of help from a trained professionals who went to University for years to get their degree can't help me. I cannot fathom that.

It makes me so angry. Not that they couldn't help me. But the repercussions in light of their ignorance. I have mentioned time and time again that my family doesn't care, nor want to give the slightest bit of understand towards my T and H. They will be intentionally loud just to piss me off. Even when time and time again I say "Please don't bang things or make any loud noises.".

Since my family doesn't care and I'm not 18. I have no legal authority over my health in the United States. Therefore, even if I some how got severe Tinnitus and Hyperacusis I would not be able to receive any treatment because my family would not allow it. I wouldn't even be able to claim it as a disability in the coming year.

In fact my family thinks all of these problems are stemmed from anxiety. When indeed they are exasperated by it. Anxiety is not the direct cause. Giving them a greater reason to attack me on the fact they have me see a counselor. Being derogatory, in hopes that I'd be admitted to a "Happy Farm".

Honestly, many of these things just bring my to tears. T and H are bad but with the lack of support from the people around you, it makes everything worse.

This is all thanks to my Audiologist and ENT not knowing what Hyperacusis was and thinking my Tinnitus wasn't noise induced.

Thank you Numour's Childrens Hospital for your trained professionals.




It doesn't end there. My family has always been this way. However, I try to ignore it. But when I can't run from their wraith. I can't hide from T and H. They begin get to me.

I think one of the most insulting statements from my brother was this "I've had Tinnitus before. I was just fine. Stop over exaggerating. Its not that bad. Get over it.". Everyone has had Tinnitus sir. As to say someone hasn't is nonsense. But the severity and length of that Tinnitus is dependent on the cause. You could have just had fleeting T. I always had it long before I got chronic Tinnitus.

I love everyone on this forum. You get it. You honestly get what I'm going through. But the fact I have to come to an online forum for solidarity within my own recovery should be insulting. Not only to my family but my Audiologist and ENT. I find better help for these conditions from an online forum than the Specialist who went to University for years to get their degree. To treat said specific problems pertaining to their field.

I am insulted by the fact even though my Audiologist acknowledge I triggered a Temporary Threshold Shift. TWICE! With no measurable hearing loss on my audiogram. Does not compute my Tinnitus being noise induced. Had the audacity to tell me I don't have Recruitment. OBVIOUSLY I DON'T HAVE RECRUITMENT.

My family thinks I am roaming the internet for an illness or medical problem in an attempt at a conformation bias. They don't trust me. They never really have. When I have done nothing in my entire life to have them question the authenticity of my words. But they trust my older siblings? They trust everyone who is not me. It feels as if my family is pack mentality and they are abusing the runt (or me the youngest). There is this conception across the internet that the youngest is treated the fairest and with the most love. That is the complete opposite. My family has always treated me like dirt.

As I come to a close on this post. I begin to see this has become a rant. Yet I feel entitled to voice my problems here. I can't voice them anywhere else anyways...

 

Many hugs, @Taylorslay. It hurts my heart to read of the lack of support and understanding you and other young members receive from family — the very people whose responsibility is to love and support you.

As a parent myself, I often think of how I would strive to move heaven and earth if my child faced a terrifying health condition. And once we exhausted medical resources, how I would continue to offer them emotional support.

Do you have a therapist? My family and friends have been incredibly supportive, but I hit a point where I felt like I wanted to give them a break from listening to my fears and frustrations. They still ask how I am, and I still speak honestly — but for me personally, having a CBT therapist has helped me cope with the anxiety tinnitus caused me.

I cannot remember how old you are, but hang in there. Do you have aspirations for college or after high school employment? I know how hard it can be to hope for the future when weighed down by hyperacusis and tinnitus. But sometimes, just a little bit of hope can help us get through the day.

 

It warms my heart when parents do deeply care about their child and their future.

I do see a counselor however, since my ENT and Audiologist think I'm "completely fine" (words from my ENT). I have no authority to speak about my problems with T and H. What happens is I'll end up mentioning T and H but then be told this is health problems stemming from anxiety and stress in other areas of my life. Which in a sense yes but not entirely true.

I have to be diagnosed with the problem before I can even get help for the problem lol.

I'm 17. I got H and T when I was 16.

I do have aspirations for college. Not to toot my own horn, but I was near the top of my high school class. I worked hard many years (even before high school) to have the ability to say that. All stemming from childhood abuse, neglect and economic problems, in which I wanted to overcome. However, in the coming years my younger self's problems seem insignificant and futile. I felt like I had purpose within high school. I had a home. Especially in my high schools FFA (Future Farmers of America) chapter. But Hyperacusis snatched that away from me like a thief in the night. As I couldn't attend school because everything was too loud or even painful. So I opted to transfer to home school.

I can't comprehend to you the amount of self worth I had lost in transferring to home school. All my years of hard work put into school, building connections and volunteering. I just felt as if I threw it down the drain. My family didn't care nor give me much support. In fact I was the only one in my family with such credentials. They made me the poster child of "success". With considering that my family is full of mentally ill and drug addict people, whom are always on the verge of homelessness. You begin to see why. I had to to overcome all of that. All until H and T came along.

But my parents mentality about my future is this "You want to be a failure? Sure go ahead. Its not my life your ruining.". Supportive, am I right?

I would like to continue home schooling because I can make sure I wont have any major spikes in my H or T. Unfortunately, I have to deal with my family more often. However, I can't graduate through home schooling. Therefore, in the fall I have to return back to my high school. I would rather go back to high school than home school. I feel so alone. I also feel I'm working more hours of the day than high school, ironically. But the eminent fear of a spike in H and T is always there. I live in a ghetto type of neighborhood. So the people whom live their have the lowest amount of stature, and class. It wouldn't even come to the surprise to me if someone ran up to me and cupped my ear and screamed. Then ran off. I've had to deal with being attacked by the trash type of people that live among me. Honestly, the only description I have for my situation is Hell.

I would love to go to university and study Audiology. I wish I had the power to right this wrong among the ENT and Audiology community. Not to mention the platform to bring Awareness to Tinnitus and Hyperacusis. One can hope, am I right?

Not to be a Debby Downer but there are plenty of musicians with such platform and audience such as Chris Martin, singer of the band Coldplay who suffers from Tinnitus. When indeed he has made statements about his Tinnitus. Has not made a significant impact by doing so. However, I will acknowledge that Tinnitus isn't his main focal point. Music is. Thus it comes at no surprise to me that he is not some "Tinnitus Awareness Enthusiast".

 

Perhaps you go to college and become an Audiologist or ENT that will help other people. I feel sorry that you put so much effort in school and T and H snatched it away. I had graduated college (2 degrees), and learned multiple foreign languages, next year i had a plan to find a job abroad. I feel like i hit rock bottom and faced a major setback in my life. In one moment i felt like i had everything in my life, i feel like my life reached a peak this spring/summer.

 

Family can sometimes be unsupportive but I'm sure they care about your well being. They just don't understand what you are going through. Maybe homeschooling doesn't mean you can't go to college, can't you do your SATs and then apply to University? If you can't then you can consider working for a while, earn some cash, fly abroad and study at a University somewhere in Europe. There must exist tons of other roads you could take to accommodate your condition.
This is just a difficult phase you are going through, you will get through this.

Kind Regards

 

You can study (college) in Norway for free, accommodation is another thing though.

 

In many cases they mean well. But meaning well for someone doesn't include screaming them, terrorizing them and physically attacking them sometimes.

 

I ignore and plan out my day to avoid them. Like I have specific times where I leave or go eat when I know no one is there.

Anytime I'm with them they always incite confrontation.

 

What's sickening about it is that they enjoy it.

 

I love them but I grow sick of their "games".

 

When you turn 18, if your family doesn't accept you and who you are and what you face....Then distance yourself. It could be harsh for me to possibly say this......But you are the one that is suffering, not them. It's selfish of them to be like this and not understand and love a family member that faces this challenge.

 

Definitely. I am planning to once I graduate.

 

When something like tinnitus happens, we have to adjust our lives and make changes that we may not like. It's unfair that it happens, but life was never meant to be fair. Hopefully your tinnitus fades and goes away, but you still have to be in a loving environment and safe environment. The stress and torment a family, friend, society can put on a tinnitus sufferer is just horrible. The stress and anxiety that can come out of , any situation simply makes you....feel horrible.

I love people and love being around good people, but I don't hang around people that are just cold and careless towards my feelings and what I face every day. Many people are like this, it's about selective choosing and seeing what fits you best, in your life that YOU live

 

My friends are entirely supportive. My family are the ones who could care less about my well being. I indeed want to space myself from them. They do me no good.

 

I think there is a saying that friends are the family you choose. Glad you have supportive friends!

I think you homeschooling — essentially doing independent study — is very commendable. When you fill out college essays, you can say that you needed to do independent study at home due to a medical condition. Colleges will not see that as a negative. It speaks to your perseverance that you worked to continue your education.

I imagine all of this feels like an awful setback, but to quote an old saying: you can make lemonade out of the lemons life handed you. You have a great attitude, I really think you can make a positive impact too.

 

I can relate, sometimes all you want to do is run away, but I could've never done that to my parents, I know I would miss them.

 

Sorry, You are growing up fast and see all the craziness, but eventually you can move on with your life for the better. And that is something to look forward too. Keep up your education nothing beats that. As far as T and H docs don't have the answers which alot of us dealt with. There is no awareness nothing which is mind blowing. Docs don't understand how anxiety can come with T and H it is assumed you had it, not mine came after T. Getting anxiety shock me so I know what you are going through. I learned a lot about T from this site, read here and learn cause we are not learning from docs. They don't want to learn. Take it slow and little steps and you will move forward.

 

So I'm going out today with my family (I have to go) with a dilemma. Their only tone of voice is loud, moderately loud and banchee screech. I know their gonna yell at me the whole car ride there, while where at our destination and on our way back. They always make a scene. I have no more earplugs and I already went through a spike a few days ago. I don't want another.

What do I do?

 

You can get some ear plugs at any pharmacy. Bad ear plugs are better than no ear plugs.

Have you considered finding some horror stories on this forum (e.g., T began after a dog barking near someone's ear, people sharing how loud noises lead to torturous spikes, etc.) and sharing them with your family?

 

I get it. When I had my first bout with T many years ago, my sisters actually turned on me, saying I was "worrying" my parents and to "get over it". To this day we do not have a close relationship.

This time with T, I have told virtually nobody except my wife (who is very supportive) and my kids (they don't know the severity that I was suffering) I figure people won't understand anyway.

Some of my friends suspect something is wrong because I haven't done the same things I used to for about a year now.

Thankfully, after about 14 months now I see the light at the end of the tunnel, as my T has faded greatly, and continues to improve.

 

I understand how you feel when I tell my sister about my T she's like you're so anoing , no one cares

 

Hi Taylor, it won't probably help now, but in the future, why not buying durable earplugs? instead of disposable ones. That is not really expensive (20$ or so).

Anyway, I just read the whole topic and I really feel bad for you. I hope you'll be able to move out of this house soon.