How to start a support 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:

Important update

A couple of weeks ago (October 2001) I ran into a brand new frustration and quite frankly, I'm not too sure at this point what to do about it. My regular house insurance policy was due for renewal and the insurance company freaked out when they learned I host a support group. Not only that, I talked to people one-on-one from time to time and this one really spooked them - "we just don't want you hanging around with all these people who commit suicide all the time." 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 non-profit 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...

Update 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 succesfully sued. 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.

Update 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 that...

Update November 2003: 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.

A place to meet

Quite a few places have meeting rooms available for non-profit 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 not apply:

Telephone

A seperate 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 teenager yelling: "yo dad, some looser 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 affraid 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 call.

"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

Pin-up bulletin boards everywhere:

• Supermarkets
• Variety stores
• Music stores (musicians are prime candidates)
• Health food stores
• Laundromats
• Drug stores or pharmacies - Keep in mind, many pharmacies do not allow posters of any kind. If they don't have a pin-up 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
• Hospitals
• Colleges, universities, schools
• Churches

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 babysitting 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 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 there..."
• Ear Nose and Throat specialist - same thing (find them in the Yellow pages)
• 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 mention.
• Senior Citizen buildings - check with the building manager for in-house newsletters.
• Local TV/radio stations - community announcements, talk show hosts, newsroom.
• 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 of 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 pin-up 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 exsists 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 hussle 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 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 ourselves..."
• "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 everone'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.

Continuity

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 anyway.

Time

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 doing chores.

Paper work

Does the group need a charter, non-profit status, constitution, governing by-laws? 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.

Funding

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 pamphets, photocopied articles etc. for people to take home. Hearing Societies, the ATA has some great material available. Other places you can often get literatue: worker's compensation boards, worker's safety committees etc. When making photocopies make sure you check into author permissions to avoid copyright hassles.

Precious moments

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.

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!

Frustrations

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 turn-out by focussing more on the few that are there. Can they help to promote the group? Do they have suggestions? It could be be that low turn-outs 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...

Summing up

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 awesome feeling!

Looking back

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 I had no choice but to fold the group - 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 miracles happen...

An update. It's now June 2005, two years after I folded the group. From time to time I still get telephone calls inquiring about the group or simply for support. I don't mind admitting, for a while I needed to clear my own head from all this involvement and needed some time-out. I've resolved a lot of issues and well, I'm kinda tempted to get back into the support group thing as I kinda miss "the action." If you're thinking about starting a group and you're within a one hour's drive of the Hamilton (Ontario) area, or if you want to get together with me for some one-on-one suport sessions, by all means drop me an email. Tinnitus does not have to rule your life and yes, I can really show you how that can work for you and help you get your life back. I'll also gladly entertain the thought of being a guest speaker at your group for a Power Coping presentation/seminar.