A Guide to Starting Your Own Vitiligo Support Group

support group for people with vitiligo
Picture Courtesy: o5am__'s Instagram Account

For some, living with vitiligo can be an overwhelming experience. One thing that can be helpful is finding the support of other vitiligo fighters through support groups, peer counseling, or an online community of support. Vitiligo support groups provide opportunities for vitiligans to talk about anything on their minds – be it vitiligo medications or dealing with the brutal progression of the skin condition.

But, what if you don’t have any support group to go to in your locality? Well, with little planning and care, you can start your own support group. There is no “right” or “wrong” way to start a vitiligo support group, as long as it is safe, supportive, and respectful of all participants.

Planning the group

As you begin planning to start your own group, consider the following:

  • What is the purpose of the group – providing social support, educational support, or mental health support?
  • What should be the name of your group?
  • Who can participate in the group?
  • What will be the structure of meetings? Will meetings have a set agenda or will they be free flowing?
  • Will the group exist for short-term or long-term?
  • How often will the group meet? You can meet in person, or connect via online chatrooms.
  • What will be the size of each group meeting? A good discussion group should have 7 to 15 members.
  • What time will members arrive for a group meeting, and for how long?
  • Will there be a cost for participating in the activities?
  • Will there be meals or snacks?
  • Will incentives such as childcare, transportation assistance be offered?

Finding the place

Here, social service workers, physicians or therapists may be helpful in providing referrals or meeting space. Try to find a free or very low-cost meeting space at a local church, community center, hospital, or social service agency. Look for a space capacity slightly higher than the anticipated crowd size. A too big meeting room will feel cavernous and empty while too small room will feel cramped and uncomfortable.

Creating the right Atmosphere

Try to create a non-judgmental atmosphere where participants, both young and elderly, feel comfortable sharing their feelings. One of the roles of a vitiligo support group is to provide a safe space in which people can talk about living with vitiligo without being judged. For this, you need to make sure that the chairs are arranged in a circle, not in a lecture set-up.

It will be important to create some ground rules so as to provide a level of continuity and safety. Some common ground rules should include:
Expectations around confidentiality: What you say in the room stays in the room.
Openness and respect: Group members are expected to listen to each other without interrupting, and speak without judgment or giving advice.
Language: Group members cannot use language that would offend anyone.
Respecting boundaries: Recognizing the physical, emotional, and spiritual boundaries of group members is also essential.

Running the Meeting

Participants can be diverse. So you can run different group meetings for different age groups. If you are bound to keep a variety of ages in one group setting, have consistent or occasionally small group break-out sessions or discussion of more sensitive topics.

The best option for focused discussion is choosing a topic before the meeting. Topics can be directly or indirectly related to the group’s core problems such as the feelings of shame, guilt, and inferiority in vitiligo. You can initiate the discussion on the chosen topic, but never force everyone to speak. Also, it’s best to exclude medication from the topics of discussion. Medications can play an important role in vitiligo treatment, but the goal of a vitiligo support group is to provide support and help members gain confidence even with a visual difference.

As a thumb rule, never close a meeting without thanking people for attending, sharing and listening to each other.

Nurturing the group

Informal socializing can be the final part of the meeting. This includes catching up with one another, continuing an informal discussion of the chosen topic, and asking for additional advice from other members. To initiate such socializing, keep refreshment ready after each meeting.

You should also be asking for regular feedback from existing members. This will help you to make your group stay relevant. Expect your group to undergo frequent “Ups and Downs”. Here, having a mental health professional or a famous individual with vitiligo as a guest speaker can be very helpful to break the boredom.

Infuse new a variety of media and sensory activities (movies, physical activities, creative projects) to keep content fresh. Maintain a library of magazine articles, videos of relevant television segments and other websites on vitiligo. They will be valuable resources for group members.

Reaching out to more like you

In the beginning, group members may be very small in numbers. Increase awareness by posting flyers (with contact information) at appropriate places like a local community website, library, community center, clinic, or post office. Submit your notice to local newspapers and church bulletins to spread the word.

If you partner with a clinic in your area that provides UVB Phototherapy or other forms of vitiligo treatment, it will be easier for visitors to know about your group. If you are not familiar with such clinics/hospitals in your area, you can always search for them using the services directory or Google.

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