Starting a Support Group

By Linda Reveruzzi

Originally published in CFIDS Youth Alliance News, Spring 1997

The needs of young persons with CFIDS (YPWCs) are numerous. It is exasperating for a parent or young person to even think about trying to fulfill just one or two of the most important needs, let alone trying to address them all. Therefore, it's important that you start small and progress in an orderly fashion or you will stumble and fall into a deeper chasm of despair. One thing you might consider is forming a support group or network so that YPWCs and parents can learn from one another how to tackle some of their most common or difficult problems.

The first step in starting a support group is putting a notice in your local newspaper stating that a support network is being formed for adolescents suffering from CFIDS and/or fibromyalgia. Be sure to include both illness titles, since a person's diagnosis sometimes depends more on what kind of specialist makes the diagnosis than the symptoms he or she has. Make sure to include basic information about the new group such as how people can get more information.

You'll also find that parents of YPWCs need support. When a child has a misunderstood illness, parents need all the support they can muster to get through the progressive stages of acceptance and grief: believing in your child, questioning the veracity of the doctor's analysis, believing in your child again, and so on. You might wish to start a parallel support system for parents of YPWCs.

Your next step is contacting the school nurses and/or administrators at your local junior high and high schools. Tell them you are starting a group for young people with CFIDS and fibromyalgia and ask if they know of any students in their schools who have these illnesses. Make sure you tell them that you are aware of the laws of confidentiality. If they can give you the number of YPWCs in their schools, at least you will have an idea of how pediatric CFIDS impacts your community. It can also tell you whether or not you can form an alliance with others seeking educational assistance. Leave your name, number and information about the group with the school nurses and administrators and request that they give it out to anyone who might want to join.

It is also helpful to send each school nurse a few pieces of information which list and explain the symptoms and how the nurse can best assist these children. Also send information about how teachers and the school system can best help these children to learn while enduring a debilitating, invisible, chronic illness. Remember, you need these nurses to be advocates, so try to work with them.

The next issue you may need to address if you choose to hold regular meetings is where. Try to get access to a couple of rooms for free. The reason I mention two rooms is because parents will have their own agenda for discussion and the adolescent group most assuredly would rather be alone to discuss their own issues or simply to get to know each other and laugh.

You have a few options when it comes to finding locations. Your libraries, schools, non-profit organizations, churches and hospitals are good places to contact. Hospitals usually have conference rooms available and if you can use the name of a doctor on staff as a referral, you might get the rooms for free. Keep in mind that you will need chairs that are comfortable, permission to have drinks and snacks, access to electrical outlets for a coffee-maker and heating and air-conditioning. An added plus would be if you were able to use a TV and VCR at that facility in order to incorporate educational videos into future meetings.

The next hurdle is when to hold your meetings. From our experience, Thursday nights from 7 to 9:30 p.m. work well. Weekends are not good simply because families are always busy doing other things, but Thursday nights our parents don't seem to mind grabbing a quick bite and, in some cases, driving up to an hour each way just to be with friends who can understand, give guidance and show compassion. It always seems that 9:30 comes too quickly and the meeting continues in the parking lot until at least 10 p.m.!