Why Are Many/Not All Not Stating Our Reality of Tinnitus and Other Issues?

[Brianna]

I thank NiNyu for responding openly to a question about how T really affects us. No fluff, no "hope" (dislike that word myself) just a straight response. I agreed with him and felt sorry for shedding a small glimpse into reality by a poster. But he spoke the truth and I backed him up. Others have done it but not as bluntly and bluntly was something I felt I needed to see here. sakrt did the same thing. Truths helped me.

Here's one sample of a coverup. When considering getting a cochlear implant (CI), I ended up on a website. What I didn't realize at that time was it was a website owned and controlled by one of the three implant companies. My immediate thought was, "These people are on happy pills. WTF is going on here?" I didn't know until I posted a response to a woman who was afraid of surgery and I simply (no more than this) said something about surgeries all having risks. The happy gestapo-like mods sent me an email to remove my post by 10 p.m. la de da happy happy or they would do it for me. I quickly learned it's a site owned and operated by one of the three CI companies and they can do what they want. My career was in info tech and I know realities of the web (to a degree) based on 30 yrs in that field. One of those things I know is the goal was to keep them in business and not allow anything remotely negative posted.

I posted what happened in an alldeaf forum and was attacked. I know when a post is removed. But the attacker(s) accused me of lying and I received a form of a threat to report me to the company. My response was a screw you and I deleted all my posts that I could and left the site. It got that nuts. I'm not saying they don't help people but they really can really screw up some people's heads condition dependent - like mine.

Here, there is more openness w/our individual reality. We can't deny that T is a complicated disease that does debilitate people to different degrees. We're here to support those who are in pain and looking for answers. But often a certain degree of social mores are followed, so we don't hurt the person more than they're hurting already. I enjoy the occasional laugh (my favorite is doing a neck and head transplant to help us).

Yes, I can go to the woods to distract myself. Yes, I can go for a motorcycle ride (when conscious enough) and that helps sometimes and T always there. Yes, too, some people have it and it goes away. But for some part, it seems we're not really stating the reality of the disease to give "hope."

If I went on a forum that was completely or too negative, I'd leave it.

This isn't meant as a vent at all. I'd like your opinions - not attacks - so I can remain here without the T blowing out head. Why do some of us greatly soften our reality beyond "normal" ... whatever that means ... social mores?

 

[erik]

I think our perception of T varies much from person to person. Mine can be 10x louder than the next person, yet it bothers them more. What is really the definition of "normal"? What about "perspective", "reaction" and "point of view"?

What is normal to you, may be completely different than what is normal to me. One the other hand striving for happiness (which some people say is normal) is almost always going to leave you disappointed. You will never achieve the happiness you long for if your view of happiness is distorted by the perception of what you think it should or should not be. I have had to really challenge my thinking the past few years on what I view as normal (not comparing myself to others) and how I look at my own happiness (it could always be much worse).

I doubt there is a normal. Everyone has something going on inside them that is different from the rest. We may be struggling with tinnitus. The guy standing in line behind us at the supermarket may have cancer. My father has had blaring loud tinnitus for 35 years from his 30 years in the military. He is also battling, hepatitis C, heart disease (3 bypass operations), had a liver transplant and Type 2 diabetes. He says T is the least of his problems.

Sorry if this does not directly answer your question....just my thoughts

 

[Brianna]

Thanks, Erik. I don't know what normal is either. That's why I emphasized it best I could - what's normal - in my question. This isn't a social more coming from my fingers and I'm really very sorry about what your father's going through. I cannot CANNOT imagine what that's like. I appreciate your opinion. I don't think I could exist for 35 years with, "blaring loud tinnitus," and I know I don't have that excruciating amount of time.

After posting the thread, I searched for and found a person who I wanted to see if he was still around. I found a recent post by him that clearly said he didn't want to live with false hope.* It's another perspective that also adds an opinion (w/out his knowing it) to my question. *Some people do.

 

[Albert Savage]

Brianna, we each have our own "normal" and we each have our own "hell." And like Erik's father, T is the least of my worries. For me the T was like living in a sound booth for eternity. For most of my working life my worries centered around the safety of my Lovely Bride and my Brilliant Daughter and whether I would life to make it home every night.

For my family the fear was having a City sedan pull up in front of the house with two suits getting to convey there sympathies of her new widowhood.

 

[Brianna]

Brianna, we each have our own "normal" and we each have our own "hell." And like Erik's father, T is the least of my worries. For me the T was like living in a sound booth for eternity. For most of my working life my worries centered around the safety of my Lovely Bride and my Brilliant Daughter and whether I would life to make it home every night.

For my family the fear was having a City sedan pull up in front of the house with two suits getting to convey there sympathies of her new widowhood.

I agree we all have our own normal. We also have our own lives to live. You sound sweetly like a super cousin of mine who appeared unscathed by many things in life.

My normal is getting through what I have before me. At this point, it cranks up some larger portion of my life as I don't have your lovely bride (congrats ) or a brilliant daughter. T looms larger for me and as I age even more (is that possible ) it will likely get much worse. It's all a part of my life.

Just hopping back to the thread name. Since we maintain some sort of cloak about our conditions, we also don't know what's really up with folks - including me. The openness and exposure of this forum (on third-party software, which means more to me than most folks here) will maintain the cloak coverage even for me.