Unable to Work Because of Hyperacusis/Tinnitus: How to Pay for Things?

Hello,

I’m currently not working due to hyperacusis/tinnitus and it is causing family & money issues. I live with my mom and she pays for everything which isn’t fair to her. She needs that money to live on - she is retired and that money will be necessary for her future.

As you all have probably experienced, benefits/disability do not seem like an option. I applied for Medicaid but was not approved. I’ve briefly looked into disability but I do not think I meet the requirements. I should probably cancel my expensive insurance or find something cheaper, but I’m worried since I use it to see doctors.

To those who cannot work: How do you pay for things like food and other essentials?

I’m scared that I’m draining my mom’s retirement fund. Any tips or suggestions are appreciated.

I would like to try working from home as soon as possible but I’m withdrawing from meds (my fault) and don’t know if I can keep up. Also, it seems extremely unlikely to find an online job that doesn’t require phone conversations. I’m terrified of worsening by speaking on the phone. The clacking of a keyboard might also be an issue.

Thanks so much. I also don’t know how to do things that are potentially noisy (laundry, cooking) without the possibility of worsening. I can still hear sounds through double hearing protection (esp. squeaky/high pitched ones) and I’m worried they are enough to cause damage. But that’s for another thread I suppose since I’ve already blabbered too much.

 

I wonder if there are WFH text chat customer support roles. You know, when you go to Amazon and you connect to customer support via a chat box on the site rather than call in. Then you could maybe use either a membrane keyboard or a silent mechanical keyboard (they are silent if you learn to type without pressing the keys all the way down).

 

This is a good idea, thank you. If I ever get to a stable point, I’d like to look into this.

 

I'm not sure how easy it will be to get a new insurance to accept you with a condition like tinnitus. In Germany you have to have a health check if you want to change your insurance company and let them know about all of your (underlying) conditions. They then do a calculation of what they may have to spend on you and adapt their fees accordingly.

So please make sure you don't end up with an even more expensive insurance because the cheap rates they are advertising may only apply to the young, fit and healthy.

 

Thank you so much for the heads up. The criteria for assistance is pretty strict from the sounds if it, and you’re spot on about tinnitus being shrugged off by the healthcare industry.

I’m blessed to live with my mom but I’m worried about her retirement fund. Praying that I can stabilize enough to work from home at some point.

Hope you’re well!

 

The Affordable Care Act in the US does not allow insurance companies to deny or charge more for pre-existing conditions.

 

Thanks for letting me know that, @kingsfan. I wasn't aware the American health care system was so much more progressive in this regard.

That's great news for you, @scared8 because it will allow you to choose a provider / package that suits you best. I know how annoying it can be to be stuck with an company that has no qualms taking your money but doesn't really offer anything in return.

Give it a little more time. I know it's what everybody keeps saying and I remember how frustrated I felt in the beginning. Tinnitus isn't like any other ailment you've suffered from before because there is no instant cure to it. When I got my first tinnitus noise I couldn't imagine getting used to the dentist drill in my head, but the mind works in a miraculous way and I learned to cope. The same thing happened when two more noises joined the first one as well as when noxacusis set in.

Every time my tinnitus changed I thought, this is the last straw. And for a while it was but after another while and a lot of tears and frustration my mind adapted and it got to the point that the noises in my head weren't the single one focus of my life anymore. It was different with noxacusis, I give you that, but with a lot of time and patience I learned to live with that, too.

Be patient with yourself and try to stop blaming yourself for what happened. The situation is what it is and you only make yourself feel worse if you keep bashing yourself over something that cannot be helped. Try to find joy in little things like going for a walk or visiting an only exhibition. I learned how to knit because it is something I had never done before, so I needed to pay a lot of attention to what I was doing, which made it harder for the tinnitus to compete---because the more attention you pay it, the more obnoxious it will become.

You are not alone in this. Everybody here on Tinnitus Talk knows exactly what you are going through, so don't feel bad for feeling angry or sad or suicidal or... We've all been there and we've all got good and bad days and while nobody can make this easier for you, knowing that you're not alone in your suffering can be a great comfort.

I wish you all the best!
Leila

 

Some countries don't recognize tinnitus as a disability. You should try physiological disability.

 

You mean psychological?

 

You’re completely right and it is disturbing.

 

It’s definitely possible. I know quite a few people who are on long-term disability because of noxacusis, including myself. You need to be diagnosed by multiple doctors and who understand that this condition can be disabling. You need good doctor reports, records, and testing. Then getting a good disability case worker is important too. When you apply, you need to be very specific and explain the horrors of having this severely. You can’t just say hyperacusis, tinnitus, hearing sensitivity; they won’t understand. Unfortunately a lot of people get gaslighted with this so finding doctors who understand and don’t gaslight can be difficult depending on where you live and what kind of person you are. That’s a big one. You must come across as somebody who does not seem to have mental health issues and you need to be calm, collected, and smart. I don’t think I’ve been questioned by any doctor how severe I am. You must make them believe you.

In my reports and in the 100 forms you have to fill out I made sure the case worker understood I am in so much pain I cannot function or even take care of myself to any extent so working is physically impossible.

It depends on your severity. It sounds like you’re severe if you’re homebound but some people need to understand that this can still be torturing you if you’re home.

I explained yeah, on better pain days I can work on a computer in silence but all it takes is one noise or a bad day and I’m out of commission for days. Impossible to hold down any online job.

It depends on how much you made when you were working too, if you made little money, you won’t get a lot of benefits, and it depends on your age too.

I hope you get it figured out because it’s definitely possible. Many of us long-term severe cases are on disability. Severe noxacusis is just as bad, if not worse, than most other conditions qualifying for disability. Only the people who have it will understand and it’s our job to open their eyes.

 

Wouldn't it be expected that someone with severe tinnitus/hyperacusis/noxacusis has mental health issues too?

Would it not look LESS convincing if you reported the horrors of your condition(s) yet appear to have perfect mental health?

Is it possible to have these conditions at a severe level and not have at least depression, a mental health issue?

 

I filed last year (for something else, before I developed tinnitus) and got denied twice before I hired a lawyer. Just had my hearing with the judge at the beginning of this month. The lawyer told me that my age (35) and that I had some college degree, might hinder me because that means I can do more. I have IC/painful bladder syndrome so I have chronic pain in my bladder and private and I can potty up to 48x/day. I had a Zoom interview with my lawyer and the judge and during the interview I asked the judge if he would like me to hold my bladder or if he would like me to go potty during the meeting. The judge told me to go ahead and go if I needed to go because it proves my case. I went 3x during that 45 minute call. So embarrassing, but it's okay. I think that if you ended up at a hearing and you could show (Peltors, natural twitching because of the pain, etc.) how bad you really are, it could help. Just be honest and calm. I would apply sooner rather than later, because the process can take over a year. Having documentation from doctor appointments help, or you can explain that you don't go often because you are homebound and any noise can have disastrous effects. My friend got disability for anxiety and the judge asked her why she doesn't have any medical records, she said because she was too anxious to see a doctor! Ha ha. It's true, and she won her case. Tinnitus also causes insomnia, depression, anxiety, so these would be added to your case as well. Look up "tinnitus and SSDI" ❤️

I would contact a disability lawyer.

 

I’m so sorry you’re suffering, and I’m glad your were able to receive assistance. Did you get started on a specific website? This might be a dumb question, but is there any cost associated w/ a case worker & were they able to accommodate your ear injury while working with you? I might need to find new doctors which sounds daunting - the ENT, one specific audiologist, and my psychiatrist all say it’s anxiety. The only person in the professional arena who agreed it was acoustic trauma is a therapist I saw who used to be an AuD. I only saw her once so I’m not sure how that would work if I’m not an ongoing patient.

Thanks again - I truly hope you’re doing ok.

Oh my gosh, I’m so sorry you’re dealing with that! You are a trooper. Is there a way to apply for assistance to hire a lawyer? Hopefully they could do a lot of things virtually since I can’t drive.

Thanks so much, Sarah. Have you heard anything about your case if you don’t mind me asking?

 

Thanks! And try My Social Security -- that’s where you apply.

 

I had social security disability for about 10 years before it morphed into social retirement. I helped a number of friends get approved, but things have tightened up a lot since then. There are fewer people handling the filings due to government cutbacks, and there's a few things one needs to know before filing.

You absolutely need lots of doctor proof. I'm glad your friend was approved w/o it, but I wouldn't count on that. I filed for the disability numerous times in San Francisco and was always denied due to of a lack of medical evidence. California provided very little medical help for people that had no income, so getting enough evidence together was almost impossible.

When I moved to Hawaii and filed, the state provided me w/ excellent health insurance. I was approved within 3 months because finally there was lots of documented medical evidence. However, Hawaii doesn't offer this sort help anymore. You also need plenty of hard medical evidence because tinnitus alone is not high on their list for issues that automatically get approval. The side effects are though... things like depression, anxiety, etc. It's necessary to have a good doctor who understands how this works, and you need to totally not work for wages during the filing time, and ideally for 1 year previous to filing. Any earned wages will probably mess things up.

One zinger I discovered was that having a judge approve your appeal largely depends on whether you live in a red state or a blue state. Red states have judges that are appointed and in line w/ that state's politics, and the same works for the blue states. So you really want to go before a judge in a blue state, and it's better to not have to resort to an appeal. A lawyer can only do so much, the judge is looking strictly at the medical paperwork before him or her. It's the government, so you have to dot all your i's and cross all your t's.

 

Thank you so much for the advice, it is truly appreciated. I’m so sorry you had to go through all that.

Thank you so much. I started my application and should probably finish it soon.

 

I have not yet. Waiting on a letter which the judge said will take at least a couple of months.