Empathic Reactions of Doctors, Our Families and Friends to Our Tinnitus

[KotaDomowa]

There are many heartbreaking or angry stories on Tinnitus Talk about the reactions of doctors, families and relatives.

I would like to ask you if it some of the above-mentioned categories of people showed you empathy?

My example:
-> Some doctors (...I saw many...) were empathetic. A neurosurgeon, seeing that he could not help me, charged me less.
-> My parents did not protest when I spent huge amounts on trying to cure myself. They also understand why I want to try Lenire - despite the fact that as Polish people we have 4x weaker currency from the Euro (Lenire is much more expensive in terms of conversion).

I would like to believe that not only I have similar experiences.

 

[all to gain]

Doctors - no empathy. No understanding at all.
Family - they have helped me in some ways, but they don't get what i'm going through at all even though two family members have milder tinnitus. They just put it all down to mental illness and think I'm being selfish.
Friends - been sympathetic, but they don't understand what it means to be tormented by noise.

I've heard the following:

Auntie - "Man up"
Mother - "Oh tinnitus, tinnitus, my tinnitus" whilst putting her hands against her ears and cupping them.
"Get on and do it!" (in relation to talking about ending life)
Father - "He's useless!"
- "You're not as strong as I am"
- "I don't know how you are one of this family"
Brother - "He's not rational"
Brother - "You're not listening to my advice. I'm tired of repeating myself"
- "I may deal with tinnitus differently than you if I had it"
Wife - "It's all a figment of your imagination"
- "I don't want to hear about this anymore"
- "If i hear anymore about this I want a divorce"
GP - "Just ignore it"
- Just one of those things people have to deal with"
Shrink - "Lots of people have tinnitus, just deal with it"
Friend - "You've got to be stronger than this"

However, family have helped to pay for me to see counsellors etc. They want to help but don't know how to. Understanding that my distress isn't simply down to metal illness and isntead is to do with a very annoying loud noise that allows me NO WAY to EVER relax would be a start.

Only people on here truly get it!! And even then not everyone.
Should say my counsellor gets its also. She has had tinnitus for 30+ years.

I used to think i was an empathetic person, but now i realise it is very hard to have true empathy unless you yourself have gone through something.

 

[Don Tinny]

Sorry for you @all to gain

My mother and one of my sisters just say "it will improve over time again, you will see" (more than 2 years now).

I don´t talk about this topic with my couple/wife. Just a little. When we talk about T it´s like "just forget about it and it will fade in the background".

The big question here is: what do we want to hear about it?

 

[Harley]

There are many heartbreaking or angry stories on Tinnitus Talk about the reactions of doctors, families and relatives.

I would like to ask you if it some of the above-mentioned categories of people showed you empathy?

My example:
-> Some doctors (...I saw many...) were empathetic. A neurosurgeon, seeing that he could not help me, charged me less.
-> My parents did not protest when I spent huge amounts on trying to cure myself. They also understand why I want to try Lenire - despite the fact that as Polish people we have 4x weaker currency from the Euro (Lenire is much more expensive in terms of conversion).

I would like to believe that not only I have similar experiences.

To be honest, I don't think anyone in the outside world can truly understand the permanent state of horror and torture this condition brings to the table.
No matter how hard they try.

I consider myself pretty empathetic person (before tinnitus anyway), but I don't think I would be able to fully grasp that a condition (which I never even heard off), could possibly bring such level of devastation into someone's life.

I believe, that our brains are wired to perceive the world as being safe, so not being able to understand that something this bad is even possible, is most likely some part of a inner defense mechanism that will block (or outright dismiss) anything, that might suggest otherwise.

For example, if I could somehow experience a level of torture such as this at younger age (even just for a shorter amount of time), I believe it would completely alter the course of my life, as the fear of this coming back would haunt me for the rest of my days.
It would be almost the same as seeing something so horrible, that it cannot be unseen.
Imprinted in my mind forever.

 

[Solose]

My husband has been very understanding and helpful. Ive had so much anxiety over this since it recently started. He's been the only one I've fully talked to about my suicidal feelings.

Friends and family I've just told that I'm having a hard time. They've been nice but they don't know the depth of of depression I have.

 

[Solose]

The big question here is: what do to we want to here about it?

That is the big question isn't it? Even when people try to be nice, the most they can say is "I'm so sorry," and "I'll pray for you." I appreciate them being empathetic and thinking of me. But, right now I'm having trouble keeping the faith and there's nothing they can say or do to make this better.

 

[Tybs]

@all to gain
Next time someone makes such a remark, put your phone on the table with a tone from this site. Keep the volume low (no need to truly harm them), but clearly audible, and refuse to turn it off. When they leave the room, follow them around with the phone until they get mad: then (and only then), turn it off.

"That's how I feel, every minute, day in, day out."



On topic:
My friends and family are very understanding, especially my parents: it helps that we have multiple other people around who have tinnitus as well, although they all only hear one constant tone, and not multiple varying instances as in my case. Especially my parents have been awesome, helping me out with dinner when I'm low on energy and even driving me one thousand kilometers away once for a day of examination in Regensburg, Germany.

Where it comes to the doctors, experiences differ... the ones in Regensburg were great, but here in the Netherlands (at least in my area), most still work with outdated knowledge. That's not even the main issue, but they refuse to consider symptoms different from the "standard" tinnitus case, therefore no examinations any further than the ENT are done, and just say "live with it", in a way that makes me feel like I should just get out and make room for the next patient. Maybe I simply spoke to the wrong ones, but it wasn't until in Regensburg that I finally felt like they were taking my symptoms seriously. The doctors there also actually talked to and informed each other: I've never had to repeat any symptom there.

 

[Kriszti]

That is the big question isn't it? Even when people try to be nice, the most they can say is "I'm so sorry," and "I'll pray for you." I appreciate them being empathetic and thinking of me. But, right now I'm having trouble keeping the faith and there's nothing they can say or do to make this better.

Yes. That's my problem as well. I don't know what I expect to hear. I know that my family is supportive, but right now I'm so in shock, that nothing they can offer is helping me. And I know that even if I consider myself an empathetic person, I wouldn't know what to do, what to say either. I want to be sure that at least it will get better or won't get worse, but there is no certainty. And when my family members say that they think it will get better, I'm getting mad and angry. My dad tells me to have faith (I don't) , to occupy myself, to go to the garden, to do something which makes me happy, plan my future, but I can't do anything because I don't sleep, I barely eat, I don't have a will to do anything. I am either numb as a zombie or angry because of this helplessness. They tell me to go to every possible doctor I could go, because there must_be_a_cause_and_ solution. But most probably there isn't. They try to, but can't believe that this condition is such a burden on me. And yes, I can see myself becoming a jerk and a misanthrope. I'm not an envious or evil person by nature, but I envy everybody who doesn't have this shit and have a chance to live a content life. I know they have other problems and my life is not the hardest possible one, but I'm isolated, can't cope and I don't like what I'm turning into. I feel sorry for myself and wallowing, I know, but I'm not at a point where I can adjust and adapt just yet. Still hope to get there.

The doctors I visited (except my GP who is a friend of my parents, he couldn't do anything either, but at least he cared) told me point black to get used to it. The audiologist I saw was so rude that I could punch them.

 

[Solose]

Kriszti,

I looked back at your threads and it sounds like yours may be caused my ETD, as is mine. I don't know if yours will go away or not ofcourse, but just know that there is hope and treatments to try. I am getting a myringotomy and E-tube dilation. They also did a CT and found one of my sinuses is blocked, possibly causing the Eustachian tube problems, so that can be taken care of. I don't know if that will help, my ENT already told me my middle ear and eardrum look damaged, but there's surgery for that too. Keep pushing the doctors to do more testing, research ETD online, and don't worry if you seem like a jerk to the doctors, their job is to help you.

I must say keeping busy and going back to work has helped, mostly because at work I'm worried about looking stupid because I can hardly hear anyone right now and that takes my mind off the tinnitus. My husband pushed me to go back and I was resistant but glad I did.

I have also started seeing a therapist again. There's nothing she can say that will make this go away, but talking to her does give me some perspective and takes me away from my negative focus.

I have had several periods of serious illness in my life, this being the worst one. When I do have something going on, it helps me to think of some of the people I've known who've had chronic illness and live in pain and discomfort but still manage to give so much. I had a co-worker with 3 autoimmune diseases who needed weekly infusions of drugs but still managed to come to work and be caring and help children. My FIL has too many health issues to count and has nearly died many times but manages to hang on and enjoy life.

This sucks so much and feels so profoundly unfair, but I have to think I'm still in the shock and grieving stage. I have my really bad moments but also sometimes I do manage to wnjoy just a few moments of something, and I try to hang on to that feeling and remind myself that kind of moment will come again.

 

[Kriszti]

Thank you, Solose for the advice and everyone for the support. I'm not giving up yet, but the spike pushed me in a dark place. Today I woke up, after 3 hours, from a nightmare in which I had a device going berserk with unbelievable high pitched sound and everybody escaping from it in a frenzy only to realize that it was my irl tinnitus. Screwed up my whole day and the sound is screaming still.

People who deal with chronic pain or autoimmune diseases and who are able to keep their caring side and compassion are truly fantastic and role models. I hope that I will get a hold on myself and stop being this annoying to my family and friends. Nowadays it's really not easy to being around me.

 

[Harley]

People who deal with chronic pain or autoimmune diseases and who are able to keep their caring side and compassion are truly fantastic and role models.

That is very true.
I find it very hard to be compassionate to anyone after getting this affliction, since now I'm in a position, where I envy those who are dying, or those who are crippled by missing limbs, etc.
As ridiculous as this may sound, this is no exaggeration and I mean every word of it.

The only real compassion I can muster is towards those, whom are suffering with one of the loneliest and most brutal condition in existence.
Tinnitus.