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Starting a Support Group

By Kelly Morrell, San Francisco, CA

Support groups are a crucial aspect of lymphedema management. When dealing with a condition that is often overlooked or misdiagnosed, it’s important to have a safe space where other lymphedema patients can discuss the difficulties they face. For many patients, having this support system is as necessary as finding a good certified lymphedema therapist (CLT).

The NLN maintains a list of active support groups, but many patients still find that there are few options in their area. That’s why we’d like to encourage YOU, whether you’re a lymphedema patient or CLT, to start a support group in your area!

Getting Started

Starting a support group might sound like a daunting task, but with the help of a few like-minded people, it’s surprisingly easy. First, check the NLN’s list of support groups to see if there are any lymphedema support groups in your area. A quick internet search should bring up any additional groups. 

Assuming there aren’t any support groups in your area, this is your chance to make a big difference in your lymphedema community. The easiest first step is finding other patients in your area who would be interested in attending a support group. Create a simple flyer to spread the word. You can list some of your ideas or simply say, “looking for patients interested in starting a support group,” and provide your contact information. 

You can place this flyer around your community—in the library, church bulletin-board, or other space that draws in a variety of local people. Next, search for local healthcare providers, including CLTs, cancer centers, hospitals, physical therapists, and any others who might work with lymphedema patients. You can also ask local pharmacies, grocery stores, medical equipment suppliers, and cancer-related non-profits if you can provide them with flyers to distribute. 

The internet can also be a powerful tool when it comes to putting together a support group. Tap into your social networks—even if you don’t have any friends with lymphedema, someone in their network might! If you are using the NLN’s online support community through inspire.com, you can start a discussion to see if there are members in your area to connect with. Meetup.com is another great site to find potential members. It’s free to use and a great way to find new people with similar interests and even schedule your first meeting. It’s absolutely possible to start a support group on your own, but it’s always easier with a team!

Find a Space

Finding a meeting place is probably the hardest part about starting a support group. Don’t be afraid to reach out to your community. Many support groups hold meetings in hospitals, churches, members’ homes, or even a public space like a park or a coffee shop, depending on how many members you have.

Once you do have a space, try to arrange the seating in an open circle if possible. This will allow all members to see and hear each other, which will facilitate the process of sharing stories and ideas. 

The First Meeting

By this point, you’ve hopefully found at least a few people interested in joining your support group. Find a date and time that works for everyone and start planning your first meeting! Make sure you give everyone at least a few weeks’ notice, and follow up with a reminder one week before the meeting. You can also return to the places you put up flyers and ask if you can also advertise the first meeting. 

For the actual meeting, it’s useful to have some basic lymphedema literature on hand. All support groups are welcome to contact the NLN—we are more than happy to provide free informational resources for your meetings! Have all attendees fill out a simple sign-in sheet, which will makes it easy for you to contact members in the future. You can also ask about convenient dates and times on this sheet so that you can get a regular schedule going (eg, every third Wednesday).

During this first meeting, you can share with the attendees why you started the group and go over what you’d liked to see it become. Give others a chance to share their story and give ideas of what they’d like to see covered in the group. This is also a great chance to see if any attendees have connections to local doctors, CLTs, or medical suppliers who might be interested in presenting at one of your meetings. 

Don’t worry about having a strict agenda for the first meeting. Once everyone shares their experience, common themes will likely emerge, giving you a better idea of what to expect moving forward. You can even provide light snacks or drinks to create a more social atmosphere. While it’s best to keep support groups free to all, it’s okay to set out a donation basket if anyone wants to contribute to providing snacks, copying materials, and any other incidental costs. 

Moving Forward

Once the first meeting is done, take a deep breath! The hardest part is over. Keep in touch with attendees by phone or email, and start scheduling the next meeting. Contact your local newspaper to see if you can run a recurring ad, post an announcement on Craigslist, share the event on social media—now that your group is established, it’s time to really spread the word!

At this point, it’s nice to have one or two other members who are willing to help you organize the meetings. They can help distribute flyers, inquire about guest speakers, and help you set up tables, chairs, donation baskets, etc.

Continue to use the sign-in sheet so you can stay in contact with new attendees and keep track of returning members. You can also add a column for people to list topics they’d like to see covered in future meetings. 

Finally, don’t forget to let us know about your support group! You can fill out an application at www.lymphnet.org/patients to be listed on our website and in LymphLink at no cost. We also love to hear about what support groups are doing, so don’t hesitate to reach out to us—we’re here to help!