Sam’s Story: How Tinnitus Isolates

– Hi, my name is Sam, I'm from Australia. I've had tinnitus for
two and a half years now. My tinnitus came on for no apparent reason about a month after my twins were born. I struggled severely in the
beginning with my tinnitus. It caused me severe
anxiety and depression. And I did seek treatment from doctors. I was unfortunately misdiagnosed
with postnatal depression. I was struggling to get
the doctors to understand that tinnitus could actually
cause severe depression. I think as a result of that, it was difficult for my
husband and my parents to understand how
tinnitus was affecting me. And that includes my dad
who has severe tinnitus; so he didn't understand how it could cause the anxiety and depression
that it was causing me. As time's gone on, I've
found that my husband is certainly more understanding.

We've had to make some
concessions in our social life which I know that he
still finds frustrating. So some things that we used
to like to do together, for example going to the movies, we just simply don't do anymore. The cinema's too loud. I can't risk making my tinnitus worse. Even though I don't know that my tinnitus was actually caused by loud noise. I just have become so much more conscious of having to protect my
ears and protect my hearing, as I think my biggest fear in my life is that my tinnitus will get worse, and I will struggle to cope with it.

So my husband is understanding of that. But it's been difficult for us. Certainly we have changed
the way we socialize. So we don't go out to pubs, we don't go out to nightclubs together, pubs together, we don't
do anything like that. I just refuse to go to
those sort of places, even with hearing protection,
it's just too noisy. I can't take the risk. Probably things that you don't think of, [are] for example, sporting events. I'm a big fan of Australian rules football and don't go to the games
anymore because the crowd noise can be really loud. So that's disappointing and
something that I'd love to do. And that my husband and I
would also do occasionally. So we're just stuck watching it on TV.

We do go to social events
together, like weddings, or birthdays, or something like that. I'm very conscious of the noise level. We do reach out to the
person who's invited us to let them know that
we don't want to be seated near speakers or anywhere loud. So people do find that a bit strange and do ask why, what's wrong? And certainly, I think if
they don't have tinnitus they certainly don't understand. In those sort of
situations it can be loud. So I often use earplugs
and that's really isolating in that when you can't
hear as well around you, you've also got the sound
of the tinnitus in your head that's louder because you're
blocking out external noise.

It is really hard to concentrate and focus on the conversation around you. So I do find myself missing
out on certain things. Having to ask people to repeat themselves and that sort of thing. So it can be very embarrassing. And it can be very sad too
because you just want to be part, be part of the conversation
and part of the celebration. But there's that black cloud
hanging over you of noise and worry about noise. So I never find that I relax
in those situations anymore. As to my friends, I think
they've been as understanding as they can be.

It's hard for people
without tinnitus, I think, to really understand how
it does affect someone. While they certainly make
an effort to understand, I've noticed that less and
less I'm invited to things. So if they think it's
going to be too noisy or I've turned them
down before, they won't sort of ask again. If we do go out for dinner, I prefer quiet restaurants
or times of the day where I know it's not gonna be busy, so it's not gonna be loud. Again, if I do go out
somewhere that's a bit loud or I'm feeling uncomfortable,
I pop my earplugs in. But I'm having the same
problem of not being able to follow the conversations properly, and not really being able to relax. You can hear your tinnitus, I can hear my head hissing at me. That's just not pleasant. So it just doesn't make
for a pleasant experience. And I sort of find myself
just wanting the night to end and wanting to get home and
get a little bit of relief. And I've only got mild tinnitus.

So I imagine for people
with severe tinnitus, it's a lot more isolating
and a lot more difficult to deal with. And there's also the added problem of hyperacusis potentially for people with sensitivity to sounds, which fortunately I don't have either. So my friends are generally understanding, but again it's definitely
affected what we do. But I just make an, I
have to make an effort to catch up with them and do things that are more suitable to me and my goal of protecting my ears
and keeping my tinnitus at the current level that it is. Which is manageable because
I think it would be my worst nightmare if
it was to become louder, I'm not sure how I would cope. So obviously it has to
be a priority for me. I've got a young family.

I have a three year old and
two-and-a-half year old twins. So I find, obviously,
with children of that age they can be very loud, very
unpredictable as to when they're gonna scream and shout and cry. So I feel that I am constantly
on edge with the noise. I'm often putting my earmuffs on quickly. Or not fully engaging with
them because I'm worried that they're going to shriek and I'm worried that
they're going to scream. And that's really sad, because this is the time of their life that I should really be enjoying, while they're young and so much fun. So I feel like it's also
affected my relationship with my children. I'm always telling them to be quiet. Which isn't really fair. And I do feel very guilty
about that as well. However, again, I have to protect my ears and it's my number one priority. So I guess in a way I've
become very paranoid and everyone's sort of, is feeling that. And conscious of that. So that's hard as well. Certainly my partner and
my family and friends have noticed that I've
become more isolated.

I don't do the things that I used to do and I guess I am a very social person. So they can certainly see
how that has affected me in not going out as much. And not being as present at events. And certainly not seeming myself. Seeming uncomfortable or leaving early because things have got too loud, those sorts of things. I imagine this is a
problem for a lot of people who are suffering from tinnitus and are worried about their hearing. It's just difficult to find that balance between still living your life
and protecting your hearing. And the world is a noisy world. And we probably don't
get enough information on how important it is
to protect our ears. So [it's] at parties, and often
too, having an experience like chronic tinnitus, that you do realize that your hearing is important. And for me, it's become
my number one priority and pretty much all that I think about when
I'm in certain situations. It's certainly made me
a lot less able to relax and enjoy my life.

And for that reason, my heart goes out to all the tinnitus and
hyperacusis sufferers, and I hope that soon we get the cure, or a treatment, that we
so desperately need..

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