Online groups are valuable tools for people with Lyme. But there’s something about face-to-face connections that just can’t be beat.
Somebody asked me for advice on starting a Lyme disease support group. The following suggestions come from my five years of facilitating the Sacramento Lyme disease support group, which meets monthly, and from talking to people from other support groups.
You need a comfortable place to meet, preferably for no charge. Possibilities are libraries, churches, hospitals—or anyplace else that offers free meeting space to community groups. It’s important that there be privacy. Group members may talk about highly sensitive personal experiences. Don’t meet at a restaurant or coffee house unless there is a private dining room.
Decide how often you’re going to meet. Many groups are monthly. Some meet every two weeks, or every other month. A regular schedule allows people to plan.
Set up a time for your first meeting and start spreading the word. Most states have online support groups (like CaliforniaLyme, NewYorkLyme, OhioLyme, etc.) which are good places to post a notice about your meeting. Check Facebook for Lyme groups in your area, too. Put up fliers on community bulletin boards and at health food stores. Depending on where you live, you may be able to put a notice in a local newspaper. If you’re lucky enough to have an ILADS-affiliated Lyme doctor in your area, ask if you can put fliers in the waiting room.
Collect email addresses of people interested in attending your meetings and send monthly reminders.
People come to the group at different stages of their Lyme journey. Some have been diagnosed and are under treatment from a Lyme-literate practitioner (LLMD). Others suspect they may have Lyme and are looking for a doctor to take their symptoms seriously. Some are friends or family members of people who are sick—either diagnosed with Lyme or not. Some people have been dealing with the illness for years, while others may show up with a recently-acquired bull’s-eye rash.
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I call myself a facilitator, not a “leader.” I strive to create an environment where everybody has a chance to speak and be listened to with respect. However, as we all know, people’s Lyme experiences can be long and involved. It would be easy enough for one person’s story to take over the whole meeting. One of my most important jobs as facilitator is to prevent that from happening. I warn people in advance that at some point I may tell them to relinquish the floor to the next person. I don’t have to do that very often, but occasionally it’s necessary. (Some groups I’ve visited have a time-keeper, and no one is allowed to go on longer than, say, 5 minutes.)
People may have questions about doctors, medications, testing, detoxing, diet, and alternative treatments. Other topics that may come up: the IDSA guidelines, useful books about Lyme, psychiatric symptoms, how to handle family members “who just don’t understand,” environmental toxins like mold and EMF radiation, and dealing with insurance denials. Every meeting is different. It depends on who shows up and what they want to talk about.
As facilitator, I also like to have information to pass along to people who need it. Click here for a list of information sources to get you started. I also recommend that the facilitator join the Lymenet Leaders online support group (to communicate with other group leaders, uh, facilitators). The Lyme Times, the LymeDisease.org news blogs and Facebook page are other sources of up-to-date information about Lyme disease.
Another point I feel compelled to mention: I don’t view it as my job to tell people what they SHOULD do, in terms of Lyme treatment. (Other than that they SHOULD educate themselves!) Even within the Lyme community, there are disagreements about antibiotics, diet plans, and the wide range of alternative treatments. What works well for one person might be spectacularly wrong for somebody else. But even if what works for somebody else isn’t the answer for you, you might still learn valuable information by hearing their story.
Lyme disease can be terribly isolating, especially for people who have had it for years. Some people say the support group is the only place they feel comfortable talking about what they are going through. And the only place where anybody actually understands what they’re talking about.
Furthermore, even if you are being treated by an excellent LLMD, that doctor doesn’t have time to answer every question you might have. A support group is a good way to tap the “wisdom of the crowd” about the practicalities of living with Lyme disease: suggestions for tracking your symptoms and medications, different ways to detoxify, where to buy supplements online, etc.
Facebook and Yahoo groups are valuable tools for people with Lyme. But there’s something about face-to-face connections that just can’t be beat. I encourage anyone struggling with tick-borne illness to find out if there’s one near you. And if not, think about whether you might be able to start one.
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TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at firstname.lastname@example.org.