Now, information about thyroid is easily found all over the Web, to the extent that it can even be quite overwhelming to a brain-fogged thyroid patient who is new to thyroid disease. Luckily, there are many support groups, forums and listservs online – you can see a helpful list of online thyroid support venues here -- where information and experiences are shared among patients. Patients can compare notes on doctors, types of medication and doses, tests, and symptoms. Many people also volunteer in these support venues, helping their fellow thyroid patients who are having a difficult time finding answers to questions about medications, doctors and lifestyle changes. Online support groups also allow members a much-needed opportunity to vent frustrations, and to give – and get in return -- information, support and compassionate understanding.
But thyroid patients with limited or no Internet access also need support systems. And even for those who have access to online support, there can be a benefit to in-person support groups. The online Self Help Resource Center explains:
Although only the individual can take the actions to bring change into his/her life, there are times when it's too much to rely solely on personal resources. There is a unique strength in group membership which can help a person to mobilize his/her energies and attain a sense of well-being.The need for in-person thyroid support is perhaps most acute for the community least likely to have access to the Internet – senior citizens – as this is the group most likely to have a thyroid condition. Some experts, in fact, estimate that as many as 20% of people over 60 have some form of thyroid disease.
We see posters in medical facilities, local meeting halls and places of worship for classes on diabetes, good nutrition, heart health, and support groups for cancer survivors, back pain sufferers, chronically ill, and more – but rarely, if ever, for thyroid disease. It's clear that in-person support groups for thyroid patients are needed, but in most cases, they need to be started from the ground up.
How To Start a Local Support GroupAll patient support groups have something very basic in common: a quest for reliable information and a need for caring support. There is no question that forming a local in-person support group takes organization, commitment and hard work, which can be a challenge for anyone, but in particular, someone with a chronic thyroid condition.
Step 1: Assemble a Team
The first step is to get help to share the workload of organizing, managing and running a local support group. Is there someone you have met on an Internet forum who lives nearby, who has the same interest in thyroid support and information? Do you have a spouse, partner, friend, family member or coworkers, with or without thyroid disease, who might be willing to help start a support group with you?
Step 2: Select a Location
Once you have decided to start a local group, the next thing to consider is where this group will meet. A location that is geographically central to members is ideal but not always possible. Hospitals and medical centers where other patient support groups gather may be willing to provide space for meetings. They may have a patient outreach coordinator who can help put you in touch with other support group leaders.
Local libraries and schools often have meeting rooms, as well as places of worship and community centers. Some local support groups meet in members' homes or restaurants.
Step 3: Recruit Members
The next task is to recruit potential members for your thyroid patient support group. Some ways to recruit members include:
- Placing a small ad in a local paper
- Putting up posters on community bulletin boards, in medical buildings, and at doctors' office complexes
- Getting listed on cable access listings of community events
- Getting listed in newspaper calendars of health or community events
- Getting listed in a hospital or medical center newsletter
- Post on the online groups and lists
While the first few meetings may have sparse attendance, with time, and word of mouth, those numbers will grow.
Step 4: Your First Meeting
You'll want to arrive early (30 minutes to an hour) before meeting time to arrange chairs, put out educational materials and have available a member sign-in list and name tags. Greet people as they arrive and allow time for small talk before taking seats. As the meeting begins, introduce yourself and others involved in forming the support group.
Explain that the purpose of the meeting is to share information and experiences about thyroid disease.
During your introduction, you may want to share what inspired you to start the support group, and share your own thyroid story. Sharing your story helps others to feel comfortable asking questions and responding with their own stories.
Activities can include sharing names, brief medical histories and how thyroid disease has affected their lives. Ask the group what topics would be most interesting to them, and what type of guests they might like to hear at future meetings.