Tinnitus: Responses

I've had some interesting responses over the past few years when I tell people that I have severe chronic tinnitus. I thought I'd share some of them because it truly demonstrates a lack of general tinnitus awareness. It is why I started this blog to raise awareness.

Responses:

The people who believe that all tinnitus is the same usually respond this way:
1: Oh, my uncle has tinnitus and he simply ignores it.
2: I have tinnitus. I just deal with it.
3: I have tinnitus. I just use a fan to block it out.
4. I have tinnitus. It just comes and goes.
5. I had tinnitus for a few weeks and then it went away.

Each tinnitus sufferer is different. Based on the level of damage to the auditory system, the level of loudness and annoyance can be higher in some people and lower in others. What works for some tinnitus sufferers may not work for others. Also, tinnitus can get worse over time.

The doubters:
1. You look perfectly healthy to me.
2. Why is it that you seem to hear just fine?

Tinnitus is a non-visible disability. The damage is at a microscopic level. You may look physically healthy to other people but your auditory system is damaged and constantly annoying you 24 hours a day, seven days a week. It is exhausting, annoying, and frustrating.

Tinnitus doesn't cause hearing loss. The cause of the tinnitus is likely the cause of the hearing loss (e.g. noise exposure or head trauma). People with tinnitus don't necessarily have hearing loss. I do have hearing loss but it is not obvious to other people.

The unaware:
1. I hope that you get better soon.
2. No one has ever died from tinnitus.
3. You just need to think positive.
4. You just need to relax and it will go away.
5. You just need to learn to appreciate all that you have.
6. If you just work harder it will distract you from the tinnitus.
7. You just need to focus on something else other than the tinnitus. Just ignore it and it will go away.

Tinnitus is like being constantly subjected to an LRAD device 24/7. Except that we cannot run or hide from it. LRAD is used by police and military to disperse crowds. It works because it drives people crazy. They feel that they must flee the area to get away from the annoying sound. Tinnitus can't kill you but the secondary conditions can lead to death. That is why severe chronic tinnitus needs to be managed.

Every day is different for severe chronic tinnitus sufferers. Some days we are full of energy and other days we are totally exhausted.

Imagine people in a crowd being subjected to LRAD: Does it matter whether the people in the crowd think positive? Does it matter if they focus harder on their work? Does it matter if they learn to appreciate what they have? No. They feel that they need to flee. That is all that they are thinking about.

Regarding responses three through six above, the reason people respond this way is because my voice is louder than it should be sometimes because I'm trying to talk over the tinnitus and the exhaustion shows up in my non-verbal communication. I look angry when I'm actually just tired from nights of sleep deprivation. You may find that your tinnitus causes you to project non-verbal behavior that is misinterpreted by people around you.

Severe chronic tinnitus typically remains at the same level of annoyance or gets worse. If you've had severe chronic tinnitus for more than a year then it is likely to never go away. People have told me that I'm being negative when I say that but it is the truth. False hope and disappointment can lead to deeper depression. It is important to be realistic. You do want to remain positive and hopeful of a cure. There is more research going on now than ever.

The prescribers:

1. Have you tried homeopathic remedies?

2. There's a new pill that cures tinnitus.

Every few years there's a big marketing push for a new placebo to cure tinnitus. The marketing is very powerful and the talking points get into the minds of friends and family. Suddenly everyone around tinnitus sufferers are telling us about this new miracle cure. Inside, we think to ourselves, "Here we go again." 

The insensitive:

1. Now that I know this about you I'm going to make even louder noise.

2. I have trouble sleeping. We all have trouble sleeping. What's the big deal?

3. Okay, so you have this condition. There's no need to whine about it. Is there? I mean, it's not like you have cancer.

Insensitive responses lead to stress and stress can cause the oscillation in the brain to raise to a level that is intolerable for the tinnitus sufferer.

If you are a friend or family member of a tinnitus sufferer you may be wondering what is the appropriate response. The appropriate response is to allow the tinnitus sufferer to tell you how tinnitus has affected his or her life and what you can do to help. Be an open sounding board of support. If you love someone then you support them.

The tinnitus sufferer may be trying to tell you things that you can do to help but you are not taking him or her seriously. If you respond inappropriately then tinnitus sufferers typically lose trust in the relationship, clam up, and separate ourselves from the relationship entirely. This is the beginning of social debilitation for us.   

The important thing for tinnitus sufferers to keep in mind is that people generally mean well and sometimes what seems like joking to them is actually hurtful to you. They are not this way because of ill-intent but are rather this way because of a lack of awareness and sensitivity about your condition.

People around you cannot respond appropriately to a condition that they know little to nothing about, so they tend to poke fun or downplay the condition. Some people have a hard time relating to non-visible chronic conditions. People with chronic pain experience similar issues regarding relationships. 

The appropriate response:

1. How has tinnitus affected you?

2. What can I do to help you to prevent your tinnitus from getting worse?
3. I'm on your side.

The best response that I've heard was, "Let's talk about your condition. I am on your side. I want to help." I was so relieved to hear that response. Just the words, "I'm on your side." were incredibly relieving for me.

That individual referred me to the American Tinnitus Association (ATA) where I found people who are also on my side against tinnitus. Remember that the tinnitus is the enemy, not the people who respond inappropriately to it. I hope that you will also help to raise awareness so that the responses become appropriate more often in the future. I'm on your side.