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How to start a support group
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:
TelephoneA 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 groupPin-up bulletin boards everywhere:
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
Things you might run intoWhile doing the rounds with your flyers, or making phone calls to promote the group you WILL run into the odd stick-in-the- 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
ContinuityThis 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. TimeWow, 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 workDoes 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. FundingPut 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 / handoutsTry 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 momentsThe 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! FrustrationsAfter having done all the leg work, the announcement' 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 upNo 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! |