*The information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your health care professional. Always seek advice from your licensed healthcare professional in regards to your healthcare needs.
For many, the concept of a support group may be familiar, but their function or way of operating may be completely foreign to us. More than likely, we’ve heard of support groups, but it’s quite possible we’ve never actually taken part in one before. What could we take away from such an experience?
According to Mary Kugler, R.N. in her About.com article “Why Join a Rare Disease Support Group?” there are many useful reasons to participate in a support group, particularly for those living in a household faced with a rare disease. People may be drawn to take part for alleviating feelings of isolation, for coping with others’ confusion about the condition and for finding ways to better adjust to the diagnosis or living with the disease.
Whatever reason may draw you to a support group initially, it’s critical that you have realistic expectations before stepping foot inside the door. Mary Carol Randall, MA, lays out the basic premise of what you can expect in a traditional support group in her piece “Support Groups: What They Are and What They Do.” She suggests that before selecting a support group a person should weigh several factors beyond their reasons for attending, including who the support group is for (the patient, the caregiver or a loved one), what emotional dynamics they are seeking in a group, how open they are willing to be in discussing their feelings, and who they want running it – a professional counselor or peers.
The website Inspire.com offers a variety of rare disease support groups online to alleviate the issue of transportation which can sometimes pose a problem in getting to a support group regularly. The National Organization for Rare Disorders, Inc. (NORD) also provides online patient communities, patient stories and opportunities for face-to-face meetings with other patients facing rare diseases or disorders. While these connections may not necessarily link one to others touched by EB, families may still find it helpful to connect with other families who understand the challenges faced by being diagnosed with a rare disease like epidermolysis bullosa.
The key to any support group’s success lies in the willingness and commitment of its members to be open and exchange information with each other. Barbara Sorensen points out in her Livestrong.com piece “Why Do Support Groups Work?” that as these groups can be a valuable place for people to share practical information, they can also be an important resource to dispel myths and uncover misinformation that may have been conveyed somewhere along the way in their journey.
Support groups can be a valuable tool but only if you have realistic expectations and are prepared for your role in helping to make them work. Keep in touch if you decide to participate in one and let us know how it goes! We love hearing from you.