|A number of years ago, in 1994, I remember asking my
family physician if he knew of any support group where I could talk
to people about my tinnitus. "Maybe there is some place I can go to
boost my coping skills?" "No, there aren't any I am aware of." I had
to go it alone but fortunately I managed to overcome the problems I
had with my tinnitus. I would have dearly loved to be able to go to
a group back then and remembering how I felt, I started up the
Hamilton Area Tinnitus Support group ("HATS") in guess what,
Hamilton, Ontario (Canada) in October 1999. It is my sincere hope
you will find enough motivation and information here to start your
own group. |
The motivation part is simple: if tinnitus is a problem for you -
you'll find out more about it and how it affects others who are in the
same boat. You can be totally selfish about it and why not, you'll be the
first in line to get support. If tinnitus no longer is a problem for you,
it is immensely satisfying to share your experiences with others on how to
overcome the problem(s) you had with it.
At first you might think the information part is harder: what, or how
much, do I need to know? What qualifications do I need? The answers: not
much and not much. Consider the function of a peer-to-peer support group:
people sharing feelings and if available, information. Peer-to-peer means
meeting folks like yourself, folks who are in the same boat. Support
groups are about helping one another with emotional support. Support
groups are not about finding cures, or researching and debating medical
theories and procedures, or fixing problems - those are the jobs of
medically trained experts. If you are in the medical field and want to
start a group: pat yourself on the back. If you happen to know just a bit
about tinnitus and can answer some of the common questions, that's great.
If not, that's OK too. Things you need to consider:
A place to meet
Quite a few places have meeting rooms available for nonprofit community
events and are very approachable for good causes. Before you go shelling
out to rent a meeting room, here are some places you can try to hit up for
free, or low cost, meeting facilities. By the way, I mention smoking in
the "Con" category but these days in a lot of area that of course, does
|Your own home or apartment
||Saves you looking around for a place and you don't
have to go somewhere to attend
||Potential privacy, security and liability problems
|Condo/Apartment building rec rooms
||Talk to the super indendant, or preferably the
building complex owners, to see if they allow you to use the
building's rec room. Nice and quiet conditions, usually a wet bar
& coffee machine available. Invite the super or the owner to
come to one of your meetings so they can see what you are trying to
do for the community.
||Super's tend to come and go so make sure you try to
get the building owner's permission in writing so you can show it to
the new super if/when there is one else chances are they don't even
let you in. |
|Public Library room
||People know where it is, usually wheel chair
accessible (in Ontario anyways), message board for posting notices
||Members might feel uncomfortable about being
recognized by library users |
||See above + availability of community publications
you can announce your group
||See above |
|Supermarket special event rooms
||Easy access, excellent parking
||Often noisy (PA systems, shoppers), |
||Some people might not want to come if it's "the
wrong" church. Many churches expect donations which might be a
problem for upstart groups. |
||Instant credibility for the group, excellent parking,
built-in potential candidates for guest lectures
||Often expensive parking might discourage folks to
come while others might cringe at the thought of being in a
||See above. |
||Excellent parking, wheel chair friendly.
||Member privacy, rooms could be noisy |
||Many possible locations, excellent parking, wheel
||Might involve heavy duty talking and negotiating with
||Built-in group exposure in industrial environments.
||Depending on your part of the world: alcohol, smoking
on premises. |
||Many service people are likely candidates for group
||Depending on your part of the world: alcohol, smoking
on premises. |
|[Hard] of Hearing Societies
||Built-in "customers," excellent support and promotion
from the Society.
||People might be under the impression it's available
only to deaf people. |
A separate telephone number strictly for use by the support group is
great, but not always practical or possible because of the group's budget
restrictions. Sometimes organizations providing meeting rooms have voice
mail systems available for the groups they host. This kind of set up can
be real handy because group members can take turns in retrieving and
answering messages. Should you decide to use your own home or office phone
number (your boss might be real impressed eh...) for the group, make sure
all family members know about it. Imagine your teenage kid yelling: "yo
dad, some looser's telling me they're beeping and wansa talk to you!" I'm
sure you get the picture...
The phone rings...
"Uh, [long silence] is this the number for tetanus?" Be patient,
callers often are not sure how to start the conversation and often do not
know the terminology. Remember, just like at the meetings, you
cannot/should not try and fix the problem, especially on the phone.
Suggest they attend a meeting and bring a spouse, friend, anybody - they
do not have to come alone. Of course, sometimes they do not want anyone
else to know about them contacting you. It's important to respect their
privacy. If they leave a message on your answering machine and you return
their call, ask for them personally: "Hi, I'm Joe, may I please speak to
Joe." Do NOT tell them you're with a support group: the person you're
calling might not have told anyone about their tinnitus because they're
afraid of being thought of as weirdos or freaks. If the person is not
there, leave your name and number and wait for them to call you back.
Again, do not give the reason you are calling to whomever answers your
"Uh, [long silence] I can hear voices..." It's been on the tip of my
tongue several times: "we only do noises, not voices." Please don't ever
get tempted to make this your answer, it is as real a problem for some as
is tinnitus. Hearing voices, or radio stations, is NOT tinnitus and
therefore well beyond the scope of your group. Suggest they contact their
doctor or someone else qualified to deal with this. Anything flippant, or
light hearted, is no different than the "nothing anyone can do about it,
learn to live with it" people with tinnitus get to put up with.
Places to advertise your group
Pinup bulletin boards everywhere:
- Variety stores
- Music stores (musicians are prime candidates)
- Health food stores
- Drug stores or pharmacies - Keep in mind, many pharmacies do not
allow posters of any kind. If they don't have a pinup board ask the head
pharmacist and give them a copy of your flyer "for their own records"
while you're at it.
- Public libraries
- Post office boxes
- Lunch/staff rooms
- Colleges, universities, schools
From time to time take a tour around town and refill/repost the ones
that have disappeared. Don't feel guilty about ripping down someone's MLM
or baby sitting service ads, these boards are meant to be for community
services only. If you're worried, ask the store manager to make room for
your poster. Click here to take a look
at the poster I used to (please note: this
group no longer exists) use. It's in PDF format so you'll need
[the freeware] Adobe Acrobat to see or print it. Edit it to your heart's
content or simply keep it the same, whatever.
More places to advertise
- Family doctor's offices - if you can personally give one to the
doctor, perfect. You probably only get to talk to the receptionist so
give them two: one for the doctor and one "for keeping on file." And
heck, since you happen to spot a bulletin board, "mind if I stick one on
- Ear Nose and Throat specialist - same thing (find them in the Yellow
- Neurologists - same thing
- Psychiatrist - same thing
- Audiologists and hearing aid stores - these fine folks are awesome
allies to have and are always always totally delighted to hear the good
news about tinnitus support groups starting up.
- Local newspapers - most of them have a "good causes" section for
freebie announcements. If you can write, don't be surprised if they
print your article or letter to the editor.
- Local community newspapers - same thing
- Town/city event calendars - often a place where your group can get a
- Senior Citizen buildings - check with the building manager for
- Local TV/radio stations - community announcements, talk show hosts,
- Community Cable TV - see above.
- At other support groups: drop by at a meeting of whatever support
group, it'll give you an idea what others do to fill an evening. The
focus of other group could easily tie in with tinnitus: mood disorders,
migraines, depression etc. Introduce yourself before the meeting and
your purpose for being there. Often you get introduced during the
meeting and get a chance to spout off about your own group. By all means
take some of their flyers and put them out on the table at your own
meeting. Of course, it goes without saying you should bring a goodly
bundle of flyers yourself to give to them. Not only do you get the idea
what other group are all about, sometimes you hit it lucky and get to
meet fabulous people. I once had the great pleasure to bump into Dr.
Stephen Nagler, it was an enormous pleasure to meet him and put a face
to someone who I greatly admire. Also a great guy, Dr. Raj Mathiramani,
who happened to be a psychotherapist and teaches psychology courses.
Guess what, he invited me to attend his courses and now I got me two
totally legit and awesomely spiffy psych diplomas I never counted on...
- Ask group members to take a few flyers to put up around their
neighbourhood to spread the word. They can give one to their family
doctor, dentist etc. next time they need to see them.
- Encourage group members to talk to others about their tinnitus,
they'll be simply amazed to see how many people they run into that know
all too well what tinnitus is, and thereby clearly illustrating the
point that you're not alone. Not just for your own sanity, but they just
might have a dickens of a time with it themselves and be pleased as
punch to find out there is help/support available. Who knows, you might
just have made it possible for someone to "keep the lid on."
Things you might run into
While doing the rounds with your flyers, or making phone calls to
promote the group you WILL run into the odd stick-in-the-mud. Receptionist
at doctor's offices telling you they don't want your flyer, "we don't do
that." People who refuse to let you pinup a flyer, "we don't do that." I
remember phoning the mood disorder clinic at our local psychiatric
hospital, "no, tinnitus is a medical problem, we only deal with
depression." "But what if the depression is caused by tinnitus" "Then they
have to see their doctor because tinnitus is a medical problem..."
Ten-four rubber duck! Be polite, thank them for their time anyway and hang
up the phone. After you hang up, call them right back. Yup, just like with
government offices, chances are someone else will answer the phone and
will be totally pleased to hear about your group!
Keep track of
The places your contact telephone number ends up at: before you know it
you'll be listed in all kinds of directories, computers and who knows
what. Should your phone number change, or you can no longer be involved
with the group for whatever reason, it's up to you to notify all these
folks. Not only as a courtesy, but the people looking for support deserve
nothing less than getting proper and up to date contact info. Nothing
worse than for someone to finally discover a group exists in their area
and then get shot down with a "this number is no longer in service." I'll
grant you, sometimes it is unavoidable because your name and number do
find their way into totally unexpected or unknown places, but you have to
try your darndest.
Things to expect at meetings
- People might be uncomfortable being there, uncomfortable because
they don't want anyone to know they're there. Suggest they talk to their
spouse or significant others to share their problems, going it alone is
not a satisfactory way to recovery.
- Meeting others with tinnitus face-to-face can be a powerful and
emotional experience. Watch out for eyes misting over, or someone to
actually burst out in tears. Try to take them aside to an area where
they will not interfere with the meeting until they calm down.
- Marketeers. There's folks who flock from support group to support
group to hustle health stuff: pills, supplements and all kinds of
wonderful junk they stand to make a bundle on. They could be selling it
themselves, for someone else, or handing out business cards for ear
candling etc. Make no bones about it, they're not welcome to do so and
please stop it right now and/or leave. Speaking about ear candling, or
ear coning: the sale of ear candles is illegal in both Canada and the
United States. They are deemed to be medical devices and are not
approved as such by neither Health Canada nor the F.D.A. When I asked
someone in Health Canada if ear candling as a procedure itself was
legal, the answer was something like "you're performing a procedure with
a non-approved medical device that's illegal to sell..." Hmmm, I ain't
no lawyer but defending yourself in court against charges of practicing
medicine without a license for one... Check with Health Canada and see
what they have to say about ear candling and if you're still hell bent
on wasting your money - you'll get a lot bang for your buck if you buy
me a beer or two...
- People hogging the floor with horror stories: you don't want them to
scare anyone into far out fantasies about how horrible tinnitus can be
and leave more worried than when they came in.
- "Those yuckie, uncaring doctors - they just don't give a darn..."
Some truly don't, but MOST truly do so be sure you don't paint them all
with the same brush. Try keeping a list of the doctors people see - and
make sure they get a flyer...
- Fixers - some people just can't accept the fact there's no immediate
cure available right now, this very minute. They just can't resist
trying to find a cure themselves and will egg others on to help with
research etc. "If they [them yuckie doctors] don't, we'll have to do it
- "We ended up talking about something that didn't have anything
hatswhoaever to do with tinnitus..." Great! Being in each other's
company is great support as well, perhaps even an indication the people
in this group are well on the way to shedding the burdens of their
tinnitus - consider it positive and pat yourself on the back for doing a
good job at that meeting.
- "People only show up for one or two meetings and you'll never see
them again..." Two ways of looking at it: 1) you're doing a terrible
job, or 2) you're doing a fabulous job! I spoke to some folks who's job
it is to promote group start-ups. According to them this is common for
all groups, no matter what the group's focus is. Again, be positive to
yourself about it and take it as a pat on the back for doing a good job.
- "Whenever I come to these meetings my tinnitus is way louder..."
Yup, very common because it is foremost in everyone's mind when you are
at a meeting. You talk about it, think about it, focus on it - of course
it's going to be more noticeable at that moment.
- Case workers with their clients. After our group was up and running
word got out that we were doing good things. Waddaya know, health care
case workers from the Brain Injury Clinic started showing up to
bring their clients so they could attend the meetings - we had hit the
big time, we were getting famous. Pretty darn flattering and down right
cool!!! I missed the boat big time though: I totally forgot that these
were prime candidates for getting decent contributions and/or
sponsorships. At the end of the meeting it was all too obvious that they
hadn't bothered to part with even a token coin or two while sucking up
on the coffee and goodies I provided at my own expense. Be sure to hit
them up: after all, their employer bills the health system for them to
sit in on your meeting and they're making a decent pay cheque for
themselves to boot so they ought to be good for at least a ten or a
twenty at the donation box.
This is something you need to really think about. Many times when
someone learns about your group, from one of your flyers or by word of
mouth, the contact info gets put in a wallet and can stay there for many
months before it gets re-discovered. It might get tucked away until
someone gathers up the courage to call you, or until a more convenient
time, or for whatever reasons you might never hear (or need to hear)
about. Where ever, however you decide to set up your group, try to keep
the meetings in the same place and don't change your contact phone numbers
all the time. I know it's not always practical, but try your darndest
When you're the only one doing all the talking
Some people come only to hear others talk, whether it's conversation or
informative speeches. Sometimes you end up being the only one doing all
the talking. I used to run into this a lot and found myself running out of
things to say. An easy "trick" was for me to tell the others to discuss
whatever they wanted to talk about while "I had some things to do that
needed looking after." Yup, I'd simply disappear for fifteen minutes or a
half hour and go next door where there happened to be a coffee shop. This
"unsupervised time" worked out really well - people would sit there and
have no choice but to start talking to each other without having to worry
about "doing it right." Yes, some people were just uncomfortable as if
they were back in grade school or something, it's funny the way that goes.
A lot a friendships resulted from this "trick."
- It's always a treat to have someone come over and do all the talking
for a while and hey, you just might learn a thing or two. Who might you,
or should you, try to approach?
- doctors, especially Ear Nose and Throat specialists, neurologists -
they can explain how tinnitus works, the latest developments like
- psychologists - they can teach relaxation, talk about things like
cognitive therapy etc.
- pharmacists - to discuss various medications and/or herbs
- relaxation gurus - could be hypnotists, Yoga people, chiropractors,
spiritual leaders, Feng Shui, reflexology: any of these folks
can show you how to properly relax
- audiologists - discuss how the hearing system works
- hearing aid dealers - to discuss tinnitus-friendly hearing aids
- motivational speakers
- religious/spiritual leaders - is tinnitus a devine punishment? Check
this out with the group before hand as this may be an
extremely touchy subject for some members
Be careful about inviting people who have something to sell, whether
products or services. Make it clear they are not invited to come
harvest new customers. If they have something to offer that you, or your
group, finds interesting or beneficial then discuss before hand that you
expect a decent donation in case they stand to make money off your
Wow, all this sure sounds like it's going to take up a lot of my time!
It could, period. But all in all, a couple of hours a month for the
meeting itself plus a couple of hours a month delivering flyers, hmmm, not
that big a deal. When the group gets bigger you can get others to help out
Does the group need a charter, nonprofit status, constitution,
governing bylaws? Hmmm, Our group is pretty small so far and I haven't
seen the need for anything in the administrative or bureaucratic
department. If ever the group gets big enough having to worry about that
I'll be pleased as punch to try and sucker someone else into looking after
that. Me, I simply hate paper work.
Put a can, a box or a whatever near the coffee machine or something -
you need to try and recover some of your expenses for photocopies or
whatever. A mistake I used to make when people started flipping tens or
twenties, "too much, no need for it..." Accept it gracefully and if it
starts adding up too much you can always donate the excess to the American
Tinnitus Association (ATA) or something. In the mean time, consider that
not everyone can afford to donate so you can use these bigger donations to
cover shortages. Don't be shy about pointing out where the box is and
reminding people of your personal expenses incurred.
Literature / handouts
Try to keep up a supply of pamphlets, photo copied articles etc. for
people to take home. Hearing Societies, the ATA has some great material
available. Other places you can often get literature: worker's
compensation boards, worker's safety committees etc. When making
photocopies make sure you check into author permissions to avoid copyright
This is an important one folks, hugely important: you need to
completely, totally be aware that the going can get rough, very rough.
You'll meet people who are at various stages in their journey through
tinnitus land. Some are only curious. Some are there at the suggestions of
their physicians. Some are there to clutch on even the tiniest glimmer of
hope they pray for that you might give them. Some of these folks are in
dire straights and they'll spring their horror stories on you about how
totally screwed up their lives are. Listening to these gruesomely
descriptive tales can really, really, really get to you. You need to
line up someone who you can talk to if/when that happens before hand
because chances are that some day you need to depend on them to help you
put things in perspective. Don't assume for one second that you've heard
it all, even if you been doing it for a while, because I assure you
you haven't. Better take my word for this folks because it'll help you
stay away from the bottomless pit these poor souls can suck you into - you
MUST make these arrangements else you're guaranteed to be looking around
for depression support groups for yourself on short order.
After having done all the leg work, the announcement's in the paper and
you sit there eagerly awaiting the first few hundred people to come
through the doors - and only two show up... In fact, both moan and bitch
about "how come there's only us three..." You sheepishly agree because you
figured if one out of five people are supposed to have it (to whatever
degree), you ought to be able to fill up the football stadium once a
week... Yup, there could be more, should be more, but this too, is
sometimes a reality. Simple: you tried your best, you've done your job.
Since there's only a few members it'll give you more chance to really talk
to them and reach a little deeper than in a sold-out house. You can also
exploit the low turnout by focusing more on the few that are there. Can
they help to promote the group? Do they have suggestions? It could be be
that low turnouts are common for your area. I attended a migraine support
group once just to see what they did during a meeting. Of course, migraine
is more of a "main stream" problem than tinnitus - only seven people were
present. So before feeling bad about doing a crummy job put it in
perspective. Besides, even if you reach only one person, you've reached
one more than had you not tried at all - pat yourself on the back for
doing a great job!
I spoke to an audiologist one time to try and get them to put up a
poster for the group and waddaya know, they started grilling me about how
many years experience I had in this sort of thing. Demanding to know how
many, and what kind of, diplomas I had. Where did I train and what's my
degree? Man oh man, I'm thinking you got diplomas up the yimyams and you
don't have to foggiest how to affect any kind of cure so don't you dare
asking me these questions. I was furious but managed to bite my tongue and
answered "we are a peer-to-peer group, the only qualifications we need is
that we have tinnitus and since you obviously are an expert, we'd
appreciate it if you would be our guest speaker sometime." "In the mean
time it'd be great if you let us put up a flyer." "Well, ok then." Sigh,
what nerve eh...
More frustrations - insurance
- In October 2001 I ran into a brand new
frustration and quite frankly, I didn't know what to do about it. My
regular house insurance policy was due for renewal and the insurance
company freaked out when they learned I hosted a support group. Not only
that, I talked to people one-on-one from time to time and this one
especially spooked them - "we just don't want you hanging around with
all these people who commit suicide all the time" is what the agent told
me. Now there's a well informed opinion eh... The long and short of it,
they declined the renewal of my policy and I had a hard time finding
another company. When I finally did, I had to promise to stop the
one-on-one sessions and they [the insurance company] strongly suggested
I stop my involvement with the support group all together. Their reason:
I am not a professional, do not have a professional liability policy and
do not have an errors and omissions policy. Even if I could get this
kind of policy, it would be well over five thousand dollars. They
explained that if I give someone incorrect advise, even as a peer at the
nonprofit peer-to-peer meetings, I'll get sued because I'd be the one
personally liable for any damages and seein' as you own a house blah
blah blah. Like I said, I really don't know what the heck to do about it
so far but it might be prudent for you to first discuss your plans with
your own insurance people...
- November 13 2001: I spoke with someone
from the Self Help Network, according to Caroline there are no cases on
record in all of North America where self-help groups have been
successfully sued. By the way, the Self Help Network is a valuable
resource for anyone in Canada wanting to start a support group. Click here to go to their website.
- January 27 2002: I'm with another
insurance company now but it seems I was misinformed by the agents I was
talking to previously. Being at a group meeting is outside of, or "off
premises," my own house and of no interest to the insurance company.
Mind you, the one agent insisted I should not be involved. Either he's
not on the ball or maybe it is the shape of things to come. Insurance
companies did get plenty to worry about on September 11 2001 but jeesh,
common sense should not get turfed out the window. Having said all
- Just in case you ever run into insurance hassles and some company
doesn't want to renew your home insurance policy because of your
involvement in a support group, here's the lingo you use when talking to
the sales folks: "no, I was not canceled nor was I declined. The company
I was with simply DID NOT HAVE A PRODUCT THAT SUITED MY NEEDS." It's
real important to word it this way because if they figure you were
declined or worse, canceled, you'll have a dickens of a time to get
renewed anywhere else.
The time when the woman came in, totally worried and panic stricken.
The way the panic and fear melted away from her face as the meeting
progressed. The looks of joy when she left now knowing that she wasn't a
weirdo or a freak. Knowing her tinnitus was something real and not
something she was told she imagined.
The time the desperate man phoned me from his car during dinner. He'd
been having a particularly bad tinnitus day and had been chewing out
employees all day long. He was so angry at the world he'd been driving
around for hours, he was too afraid to go home because he would take it
out on his family by beating up on them or something. I met him for a
coffee somewhere, we talked for about an hour about anything and
everything. His anger disappeared, a smile returned to his face. Sure, he
could still hear the tinnitus, I couldn't fix that of course, but he
managed to regain his focus and composure.
The time a case worker brought a young fellow in, he'd been in a
car accident. We spent quite some time talking about things that distract
you from noticing tinnitus and once you discover such an activity that you
should do more of it. He showed up at the next meeting with a big smile on
his face and told me about the "bus therapy" he'd discovered - he had
noticed that whenever he was on a bus that he was so busy enjoying the
ride that he never noticed his tinnitus. The "therapy" he came up with for
himself was to hop a a city bus, any city bus and get transfer after
transfer. He'd ride the darn bus for the whole day marvelling about
how nice and quiet it was. Definitely a winning coping strategy for this
guy, you gotta love creative thinking!
Yup, I felt enormously super having been able to make someone feel a
bit better. Worth all the hassles and roaming around town dropping off
flyers? You betcha!
No doubt there are many things I have not yet thought of, or maybe
things that can be done different or better. These are just some ideas
that'll help get you started. So what's the most important thing you
should be trying to do? Simple, all you need to do is to provide an
environment where people can let down their hair for a couple of hours a
month. A place where they can meet others who are in the same boat. A safe
haven where there's no need for them to explain what they're up against.
An inviting place where they know they're welcome and not being thought of
as problem cases or weirdos. A place where they get taken serious instead
of brushed off. A place where someone asks you "how are you doing" and you
know that they know what your personal world is like right now. It's
amazing how most people benefit so hugely from only a couple of hours'
worth of sharing someone else's company and understanding. If nothing
else, it drives home the point of not having to go it alone and you know
what - spirits get lifted, moods improve, the whole world seems a little
easier to handle and before you know it people start getting on with their
lives and more often than not whether you still have tinnitus or not, it
becomes a moot point because you're back in the saddle and enjoying life.
This is neither a myth nor a dream, I've seen it time after time after
time - it's just the way it is. Lemme tell you folks, if your efforts
result in someone's life become a little less crummy, hey, that is one
Yes, looking back. In September 2003 I decided to call it quits and
stopped running the meetings of the group I had founded five years
earlier. After many, many requests during the regular monthly meetings and
after several ads in the news paper for volunteers to help me out, give or
take none, approximately zero people stepped up to bat to keep the group
going. Running the group had become a strain on my time and more
importantly, on my personal finances. Unfortunately, as a result of this
the group simply ceased operation, it died - another important item for
you to have learned and can improve on. All in all, it's been a real
privilege having been involved in the lives of a goodly number of people,
especially since most all of them ended up feeling a whole lot less crummy
than they did before coming to one of the meetings. In fact, from time to
time I get an email from some of them telling me their tinnitus is a thing
of the past. Don't believe tinnitus can be beat? Don't believe in
miracles? I sure to goodness do, I've seen it happen many, many a time!
With a bit of leg work it could very easily be your turn to watch the