People Not Understanding

[serendipity1996]

Trying not to make it sound like I am posting simply to elicit sympathy or have a pity party but aside from the hearing damage, (H +T, aural fullness, discomfort etc) itself probably the second most frustrating thing about having this is that people don't really get it.

Perhaps it's not fair of me to expect them to, it's not plain to see like a broken leg but I constantly feel that I am doubted. The doctors I've seen have just tended to dismiss it as 'it's your anxiety!', friends too tell me that I have 'literally worried myself sick' and it it my state of my mind that is inducing these symptoms. I just feel so frustrated and powerless I feel like I am banging my head against a brick wall. In my mind I am thinking wouldn't it be a nightmare if you had to spend the rest of your life convincing everyone that you're not crazy or imagining things or bloody schizophrenic/permanently messed up from psychedelic drugs (something that a friend actually suggested...) I do have generalized anxiety disorder so maybe I am being too harsh but still.

Does anyone else get this kind of treatment? It honestly makes me wonder sometimes if I am making a big deal out of nothing with my hearing damage. And don't get me started on the 'well at least you don't have terminal cancer' 'it's nothing incredibly extreme just some hearing loss'. Honestly, I would say that this is life-changing in its way....people view it as so black and white. Yes, perhaps not on the most extreme end of the spectrum like suffering a catastrophic stroke and having to relearn basic functioning like walking and talking. But you still end up having to make lifestyle adjustments etc, I feel like I can't live spontaneously anymore because everything comes down to whether my ears will be able to handle this or that.

Just needed to vent

 

[MikeL1972]

Hi serendipity1996,

It is human nature to say "well, at least it's not me that has the problem". Essentially, this is what an ENT or other medical professionals say when they say "there is nothing we can do for you at this time". I'm sure they would have a completely different outlook if they had deafening tinnitus coupled with hyperacusis like some of our friends on this site do.

On the other side of the coin, everyone in life has problems (health, financial, social, etc), from the young to the very old; from the poor to the very rich. To quote Karl Marx, "life is a struggle".

Everyone on this site has tinnitus and or some other related malady. We understand and support one another because we understand there are good days and bad days, yet we persevere because we have to support ourselves and those around us!

Your revenge against tinnitus is to live life fully and enjoy. Obviously, this does not mean you should go to a concert, club, or blast AC/DC in your car or iPhone.

 

[John G]

Funny you mentioned that. I remember someone posting a couple of articles about tinnitus not too long ago that you pass along to family members,friends. So they have a little understanding about the condition. I was looking earlier today here for that thread but could not find it

 

[whale]

I have T, H, TTS, vertigo ,TMJ, migraines and have horrible ear pain. it all started early this year after some painful dental work. I was also working with power tools so that could be a factor. I was highly functional and successful for 45 year, I was an awesome father, I got award from the school and volunteer with kids sports and programs. Now my life had fallen apart, I had to take medical leave from work and I am not able to be a father or husband. I rearly leave my house and feel crippled. there are people with T that its not a big bother. I assume the H is what makes it intolerable for us.

 

[MikeL1972]

@whale - stay strong! You have people counting on you!

 

[Oli]

Yeah I got the same feedback from my surrounding, they act like it's not a big deal and it's very frustrating because my emotinal distress is very real. I question myself theses times if It's me that tend to focus on my T too much. I suffer from OCD, it must be the key factor in my suffering with T

 

[vegasjon]

Well, I believe you!

For whatever that's worth.

 

[whale]

Yeah I got the same feedback from my surrounding, they act like it's not a big deal and it's very frustrating because my emotinal distress is very real. I question myself theses times if It's me that tend to focus on my T too much. I suffer from OCD, it must be the key factor in my suffering with T

Yes, OCD makes it harder, it may even had contributed to our condition in some way. OCD meds can help, but I think H amplifies T. I don't know many people with T and H coping well. T alone may not be as big a deal but when combined with other factors it can be debilitating. I do think TRT can help some but I haven't tried. also their is a new operation for H called Round and oval window reinforcement. We have to have hope that we can heal over time and science is getting closer to better options. Try and stay away from benzo and narcotics some doctors will give you, it can make it worse in the long run.

https://www.ncbi.nlm.nih.gov/pubmed/25456168

 

[GregCA]

T alone may not be as big a deal but when combined with other factors it can be debilitating.

T alone can be debilitating.

 

[Michael Leigh]

T alone may not be as big a deal but when combined with other factors it can be debilitating

@whale
Tinnitus alone can be a very big deal whale. It is only people outside of this forum, that have never experienced loud intrusive tinnitus think that it isn't. Therefore, I will try and explain in the post below.

Tinnitus, a way forward.

Many people outside of this forum do not realize that tinnitus can be a very debilitating condition. Even some GPs have a cavalier approach to it but thankfully not all health professionals share this view and are to be commended for their care, time and consideration they give to helping those tinnitus patients that are having a difficult time with their tinnitus. Someone that has loud intrusive tinnitus, there is usually no outward bodily signs indicating their discomfort. Unlike a person with a broken leg, on crutches and wears a cast. Neither can the severity of tinnitus be measured on any medical equipment. So the sufferer endures this torment in relative silence.

The fact that tinnitus comes in many forms and intensities compounds the issue and just for good measure it can be variable on a daily basis: mild, moderate, severe or acute. However, many people with mild tinnitus are able to live perfectly normal lives doing everything they want to because the condition hasn't become serious enough for them to visit their GP and then be referred to ENT or hearing therapist for treatment.

To people reading this post I ask, how many times have you mentioned to someone that you have tinnitus and the reply has been: My friend, Father, Mother has that but they just ignore it and get along with their life? The above comments can be crushing to someone that is distressed by tinnitus. It can make one feel terribly guilty for even mentioning the word. You might feel a failure. That old adage: pull yourself together is still alive and well in 2016.

There might be times you feel it necessary to confide in someone how your tinnitus makes you feel, there is nothing wrong in this, a problem shared is some times a problem halved. Just choose carefully with whom you talk to, as you need support, understanding and a good listening ear. Thankfully, there are people at tinnitus talk who are understanding and wont prejudge someone as being weak or overly complaining about something others might consider to be a minor irritant.

Over the years I have read in tinnitus books that the condition is not life threatening, I have heard people say it is not comparable to any serious medical condition.
In reply to all those people I will say this: You have never suffered from loud intrusive tinnitus otherwise you would think twice before making such a statement. At the very least I believe such statements are abridged. You have to walk in a person's shoes to be able to know what they are going through. You have to have been there done that then you are entitled to voice an opinion.

It is true, by itself tinnitus is not life threatening but that isn't the end of the story. Anyone suffering with severe intrusive tinnitus, I believe it is comparable to any acute medical condition, simply because of what it is able to do to a person's state of mind. Anti-depressants are sometimes prescribed as treatment for tinnitus. These drugs will not necessarily stop the tinnitus but can help prevent a person from becoming too depressed because of the noise in their head and ears. People mustn't be under any misconceptions the depths that this condition can take one to. If tinnitus is left unchecked it has the ability to make a person think and do something irrational that otherwise they wouldn't contemplate if they weren't in such a distressed state. One only has to do a search on Google to find this out. So there lies the paradox.

However, we can move forward and help ourselves by using different coping strategies in addition to such things as anti-depressants, tinnitus retraining therapy cognitive behavioural therapy and Relaxation exercises.
I have talked about the importance of having a positive outlook on life and how negative thoughts about this condition shouldn't be allowed to get a hold. Acquiring a positive attitude to tinnitus isn't something that happens overnight but we must start somewhere. Our mind and thought processes are very powerful.

There is a saying: belief can kill and it can cure. When my tinnitus is particularly troublesome I try to takeaway the attention from it, by first thinking inwards and acknowledging the positive things in my life and holding on to them - I would encourage you to do the same. Secondly, I project my thoughts outwards away from myself and into the world and look at what's happening with other people. First in and around my neighbourhood then further a field. How other people's lives are being affected and the circumstances they are going through.

It is often said no matter what our circumstances are there is always someone worse off. I am in no way trying to play down the severity of tinnitus but it is my way of trying to be positive in hope of restoring some equilibrium in my life in order for me to carry on.

Michael

 

[stophiss]

Nicely put Michael.
This forum with constant talking about ending life because of tinnitus really brings home how some struggle with it deeply. Severe tinnitus is a very large mountain to climb and as you explain, to lump all tinnitus together is quite an injustice...kind of the difference between a mild sinus headache and a migraine people have jumped out of windows because of...both headaches.

My best to all those that really struggle with this disorder. Hopefully there will be help soon to those that are most desperate and to those that are...hold out hope for the following:
- your tinnitus will lessen with time
- you will better acclimate to the tinnitus level you have where it is less bothersome.
- there will become therapies available that help those that need it most by turning off the noise in our head.

 

[John G]

@serendipity1996 I believe this is the thread that one member @Candy posted a pdf file that people can pass along. Gives a little insight about tinnitus.

https://www.tinnitustalk.com/threads/a-leaflet-for-family-and-friends.18071/#post-209883