Significant Other Survey

[Steve]

Hi all,

For Tinnitus Week this year, 5-11 February, we are going to run a survey to learn how significant others (a partner, family member, friend etc) cope with your tinnitus.

We want your input to this survey. What feels important to you? What questions do you want to know the answers to?

Our goal is to gather data that we currently don't really have, and to figure out how we can get the best possible support from those around us. The more we learn about their perception of tinnitus the better we can help guide their support.

The survey will need people with tinnitus to nominate a significant other to take part.

Please give all thoughts.

 

[glynis]

Great idea if members can get family etc to join in.
Love glynis x

 

[Steve]

Thanks Glynis.

Anyone that votes, it will be nice to hear some reasoning or get some input to this.

 

[Cheza]

For Tinnitus Week this year, 5-11 February, we are going to run a survey to learn how significant others (a partner, family member, friend etc) cope with your tinnitus.

The survey will need people with tinnitus to nominate a significant other to take part.

Please give all thoughts.

At the beginning, I told 3 friends about my tinnitus because it was so awful, and I felt like they had the right to know why I was withdrawing from social interaction. Now it doesn't restrict what I do anymore, except for avoiding loud places. Under these circumstances, I don't know how helpful my participation would be, but I can ask my neighbor if she'd be willing to participate since she's the one I interact with most often.

 

[Michael B]

I read stories of people who's family members don't seem to care. They often ask for advice and guidance on how to teach their loved ones to be more understanding.

 

[Samantha R]

My husband would participate.

He also had tinnitus which appears to be louder than mine but doesn't bother him in the slightest.

Truth be told, I am discovering a lot of people with tinnitus who cope really well which is why those of us who struggle might feel unsupported. My husband has said many times that he doesn't understand how I am so bothered by it.

So much to say that I'm surprised that he'd agree to do the survey.

 

[billie48]

I haven't asked my wife yet but being a supportive spouse she will most likely help this project. She didn't have T at first when I first got my loud T & then H and she was a bit shocked by my deep suffering and didn't full understand why but she was quite supportive thorough my struggle. Later she developed fleeting T which could be loud some days and yet quiet most of the time. She told me during the loud days that she can see why I suffered so much. Like others said before, she never seems bothered much by her T. She said it isn't as high pitch or loud as mine and it comes and go quite often. She has chronic asthma and bronchiectasis and so she is probably more tolerant of bodily ailment which makes it easier for her to accept her T.

 

[Zug]

@Steve I think it would be very interesting to add some questions about how people who don't have Tinnitus but is close to someone who does see us. I know subjectively we all complain about sleep. concentration, etc. But how about how other people see and deal with us?

As in, you can ask about before and after situations:

- "in the months following my husband/wife developing Tinnitus, he/she became more withdrawn / moody / depressed" "After T, my friend's work/career suffered" and so on. Or maybe an open question about the changes people notice more.

You can also add questions for people who feel better now, as in "when Tinnitus started my partner/friend was X, now that she says she feels better, I can tell Y changed."

I would also add some questions like "I can notice when he/she is having a bad day", "I need he/she to tell me when it's bad" - A lot of people seem to complain of not being understood by others

Just some ideas from the top of my head. Keep up the good work!

Best,
Zug

 

[Zug]

@Steve , you probably know this, but in order to get better data it's also good to ask a few question about the relationship:
1) How long have you know the person with Tinnitus.
2) What's your relationship to person with t;
3) Did you know the person before he/she developed T.

Best,
Zug

 

[glynis]

One question could be-
Do you support your partner not wanting to be around extra loud sounds?

 

[Chris Holland]

Great idea, I feel like a lot of our significant others or close friends have a difficult time coping as well. Also there seems to be a lot of confusion on why certain people (like myself) have such an incredibly overwhelming response of fear and anxiety to tinnitus at the early onset. This is explained as such:

''It is important to realize that the limbic (emotional) and autonomic nervous systems are normally activated by both pleasant and unpleasant stimuli, and that their action is essential for our well-being and effective function. Activation of the limbic system is also needed for any learning process, including retraining of the brain, as happens during TRT. In the tinnitus patient, the limbic and autonomic nervous systems might previously have been functioning entirely within normal limits. A problem only arises when they are highly and inappropriately activated by a neutral stimulus, such as tinnitus.

In the next part of this chapter, we address the issues of mechanisms involved in tinnitus perception and the problems induced by it. Specifically, we examine the hypothesis that perception of tinnitus reflects compensation of the auditory pathway to changes, modifications or damage occurring within the auditory system. The tinnitus signal itself is innocent and is not causing any harm. The problem develops when tinnitus becomes associated with something negative or unpleasant and, as a result, produces strong reactions in the limbic and autonomic nervous systems. This sets up a vicious circle involving these three interconnected systems (auditory, limbic and autonomic nervous systems). Once arousal of the limbic and autonomic nervous systems is sufficiently high, the stimulus linked to this activation will dominate all other brain functions.''​

People who do not experience this with tinnitus (roughly 75% of tinnitus sufferers) or people who do not suffer tinnitus at all have a hard time understanding this. It seems to me that proper education of significant others might be very important as well seeing as negativity in the household is a real threat to recovery.

 

[Steve]

Thank you very much for the comments so far, I think that everything mentioned will go in.

We're trying to see if we can automate things so we can group responses from a person and their significant other/s to compare the answers directly.

The survey questions can mirror for both people with tinnitus and their significant other/s. It will be interesting to know how both sides perceive certain things.

 

[LisaCuddy]

I talked to my wife and she said she'd participate if it helped others dealing with their loved ones in this matter. She does not have tinnitus although sometimes experiences fleeting T and thus knows what it must feel like and is very understanding why it scares the crap out of me.
She's a musician so she's very interested in this. She supports me and even scouts ahead when we want to watch a movie for example, so that I can be prepared to plug in if necessary.

Questions;
a) What areas of your relationship/life with your partner have you seen most affected (sexual intimacy, social situations and gatherings/outings, housework & chores, ...)
b) How do you deal with any negative feelings that might arise from the fact that you are affected by this by proxy? Do you ever resent your partner for this?
c) What would help you? Do you think it would be helpful if your partner notified you of "bad days" so you can plan ahead or do yu think that would draw too much attention on T whih already is so omnipresent?

 

[Steve]

I talked to my wife and she said she'd participate if it helped others dealing with their loved ones in this matter. She does not have tinnitus although sometimes experiences fleeting T and thus knows what it must feel like and is very understanding why it scares the crap out of me.
She's a musician so she's very interested in this. She supports me and even scouts ahead when we want to watch a movie for example, so that I can be prepared to plug in if necessary.

Questions;
a) What areas of your relationship/life with your partner have you seen most affected (sexual intimacy, social situations and gatherings/outings, housework & chores, ...)
b) How do you deal with any negative feelings that might arise from the fact that you are affected by this by proxy? Do you ever resent your partner for this?
c) What would help you? Do you think it would be helpful if your partner notified you of "bad days" so you can plan ahead or do yu think that would draw too much attention on T whih already is so omnipresent?

Excellent questions, thank you.