Joining a support group can be tremendously helpful if you are trying to cope with the everyday realities of living with vitiligo. While a vitiligo support group doesn’t necessarily replace the standard medical care, it can make you feel less alone while you make connections with others in the same boat.
Since support groups come in different formats, it is okay to be confused at first and not know which one will benefit you the most. Worry not! Here, we have a step-by-step guide to help you find a support group that’s right and equally comfortable for you.
Do your homework
If you live in a metropolitan area, contact a nonprofit organization that is devoted to vitiligo. They might be running a support group of their own. Otherwise, you can always ask a fellow vitiligo fighter. If that too doesn’t work out, ask your doctor to recommend or search the Internet. There are many online and telephone support groups for vitiligo fighters as well.
Understand different formats
Support groups may be formed by a vitiligo fighter, the nonprofit organization, advocacy organization or a vitiligo health clinic. So naturally, they would come in a variety of formats. Many vitiligo groups are run by professional facilitators (such as social worker or psychologist) and simply by group members. It’s best if the chosen group has been running successfully at least for last 3 years.
Some groups are educational and structured while others are very informal, emphasizing more on shared experiences. The group leader of an educational group often invites a dermatologist, mental health professional, or social worker to talk about a topic that caters to the group’s needs. On the other hand, informal groups let you share your experience for emotional support.
Introspect to know what exactly you need at the moment. Ideally, if you were recently diagnosed with vitiligo, you will benefit more from joining an educational group that offers helpful information and resources on the chronic skin disorder. If vitiligo has progressed rapidly in last few months, you may probably like to join an informal group to share your feelings.
Each kind of vitiligo support group has its own pros and cons. So, make a list of question you may have. Asking following questions will give you reassurance before joining in:
- What are the fees?
- What is a typical meeting like (large, formal meetings or smaller “living-room” get-together)?
- What is the meeting schedule?
- Will there be any facilitator or moderator?
- Is a mental health professional involved with the group?
- Does the group have established ground rules?
- Does it meet any ethnic or cultural needs?
Try and test (if that’s a possibility)
Ask the facilitator if you could attend a few vitiligo support group meetings to see how well you fit in the group setting. During this trial period, evaluate the group to check if it meets your needs. Some fellow group members may be pessimistic about their future appearance while you could be looking for hope and optimism. If that’s the case, don’t feel obligated to keep attending the meetings. It is important not to be disheartened as not all support groups are a good match for you.
Start your own
If you are unhappy with the available options, don’t look relentlessly for a group. Since the purpose of joining a vitiligo support group is finding comfort in the company of fellow vitiligo fighters, it won’t hurt to start a group by your own. Ask fellow support group members to join you for evening snacks and discuss the possibility of having regular meetings.