What Could Family & People Around You Say/Do to Make You Cope Better? What Do You Expect from Them?

I'm not sure if I can convey properly what I mean as English is not my first language, but bear with me.

I would like to ask, is there anything that you expect that people who don't have tinnitus can say, do that would make you feel better?

I tend to lash out on my loved ones, my family who I know very well want to help me, who care, but who just happen to say all the wrong things. And I know, that my tinnitus, my anger around it is the real problem, but I really feel isolated and in a bubble. And I really don't know what I'm expecting from them. They are struggling too, because it is not much fun either seeing someone who is either constantly down or irritated all the time, or just apathetic.

 

I don't think there is anything they can say to make me feel better. This thing has consumed me.

One thing they could stop saying though is, "At least you look well ".

 

That's definitely part of the awareness problem... Many people know someone who has it, too, and copes just well. Tinnitus has many faces. Not having limbs would be shit, but it's a bad comparison to make. Either you have limbs or you don't. Tinnitus is a different thing entirely...

 

Oh, yes. My favourite was: I lost 16 kg in the first 3 weeks, because I couldn't eat, didn't drink and was awake 22-23 hours a day. And someone who knew exactly what I was going through told me to keep up the good work and don't stop losing weight. Thanks, I guess...

 

The most important thing is them having *empathy* towards your situation and wanting to work with you as a team to help you live with your tinnitus.

All of us had different lives before tinnitus and we did many different things. Tinnitus comes along and we have to make some modification and adjustments to our lives. You as the person with the tinnitus should make some adjustments and your family should as well. It's a two way street and both parties should make efforts towards adjustments that will accommodate each other.

This is not an easy process, some family members/people are open to helping out and others do not.

We need to truly educate people/family about our situation and what pains and struggles we face. We can do this in many ways. After the education, we just have to wait and see how receptive or not our friends/family/ people will be.

It's a struggle for sure and I wish all of you the best!

 

If anything it exposes the people in your life who aren't worthy of your attention...

 

"Here is some FX-322"

 

You are absolutely right, @fishbone.

I'm very thankful and feel so lucky that my family and friends are supportive. And even with the best intentions it's extremely hard. Lots of things I do or don't seem to them as unnecessary, overworrying or straight up hysteria. And I don't know either where to draw a line between being cautious or overprotecting, so none of us know at the moment how to accommodate and adjust. I don't blame them for not being able to handle my situation, because I don't know how to either. This thing totally messed up my life and have a big impact on my family's too. I hope it will stabilize.

@JohnAdams
Yeah. I would add: "Here is some FX-322, it's been proven to work, results are great."

 

It already has been proven to work.

 

I went the other way and put on 18kgs/40lbs. Still getting bigger.

 

Hope to hell it works for those who got their tinnitus from medication.

 

Isn't it still in trial phase?

 

Uh, yeah, but they have positive efficacy data.

 

Very limited data altogether, and none whatsoever for tinnitus yet.

You are mad for raising people's hopes up.

 

I'm only stating facts.

 

“It will get better” makes me crazy. Physically or emotionally? Do you mean I’ll habituate and stop caring about it so much? Or do you mean that the sound in my ears and head will go away? Because unless “it will get better” means I will physically heal back to a quiet head, please don’t say it to me.

I know people are trying to be nice and supportive but “it will get better” really sets me off. I never lash out about it, but I have a fight with them in my head about it.

 

My family and friends mostly help me in being patient with me. From the start, I quickly stopped expecting them to "understand" the condition: they can't, and I don't blame for it.

My parents are very thoughtful, and since I had some issues in taking care of myself correctly when T became an issue, I asked them if I could have dinner at their place during workdays. This gave me the option to fully focus on pushing myself to keep a solid schedule with the annoying stuff filtered at first (I hate cooking). There were more things were I asked for some support, but the dinner definitely helped the most, as it also gave me someone to talk to on days when I needed it. In time, I slowly took more responsibilities for myself again.

IMO, practical support is the best way of helping. The mental stuff... well, I'm confident that you need fellow sufferers for that. People unknown with the condition just can't grasp it, it always shows when it's being discussed.

 

I hear you on the dinner. I live alone far away from my immediate and extended family.

In the second week after onset, my mother heard the panic and terror in my voice, and flew out to California the next day. She stayed for seven weeks. She made sure I ate and went to Doctors with me, and pushed me to go to work. She took me on a road trip and we went to national parks. She meditated and prayed with me. She 100% doesn’t understand tinnitus, but she knew if she didn’t do what she did I may not be alive today. Just having her there in the evenings got me through enough to push forward. I will be forever grateful for that time.

 

Tinnitus needs adjusting and lots of it. In time we can eventually get better at it. Our emotions are very crucial when it comes to dealing with tinnitus, it's not always the sounds that are the culprit. Stress,anxiety,phobia are just as bad and can possibly annoy our tinnitus.

Life has it's ups and downs, how we act/re-act to them(our unique situations/ordeals) is what makes the difference. I have modified my life and have had multiple transformations through out the almost 32 years of living with tinnitus. Having gone through almost all the stages that tinnitus has had to offer me, it has been constant adjustments attitude wise and routine wise.

It's a journey and we need to do our best to manage/cope and push daily with our affliction.

 

Very sorry if this is a repeat post/if this has been dealt with elsewhere but I’m just wondering how do your families deal with your tinnitus issues?

I’m really afraid of telling my mum how scared I am because seeing her like that would make me so much worse. I don’t want her to suffer on my behalf.

Is it something they learn to deal with? I don’t want any of my loved ones to look at me differently, I want all our relationships to stay the same as they were before - am I just clinging onto a false hope that I can have any sense of normality???

Peace and Love.

 

People have absolutely no idea what this horrid condition can do, because their brain is not programmed to even process the fact that something this bad is even possible in a day and age where there is a pill or a surgery available for just about every condition known to men (with the exception of some known fatal diseases of course).

Unless the person had been kidnapped and brutally tortured 24/7 themselves with no possibility of escaping at some point, they simply cannot relate to any of this, as it is well beyond the scope of their current level of comprehension.
People say these words, because that is what they are conditioned to say in this type of a situation.

The only people who can relate are here on this forum so you are in the right place, however the differences in tinnitus intensity are so vast amongst those affected, that even here you might get some advice which you could find to be agitating, as everyone experiences tinnitus differently.

Anything from:
"I can only hear it in a quiet room, if I plug my ears"
To
"I cannot live with this unmaskable screaming jet engine inside my head any longer".