Support Groups and Conferences

Have you benefited from the experiences of others?

By Annette Beach

Regardless of your diagnosis, do you know others who have the same illness or face similar challenges? Are you involved with a support group? Have you attended gatherings or conferences that focus on your disease?

As many of you know, living with an illness can leave a person feeling isolated and lonely. Although family and friends try to understand, they cannot truly grasp the everyday challenges and emotions that accompany long-term illnesses.

For the first 13 years of living with my arthritis, I felt alone. When I sat in the waiting room of my rheumatologist’s office, the closest person to my age was twice as old as me. Many times I called organizations seeking support and understanding from people with a similar diagnosis, between 20 to 40 years old, but was unsuccessful.

In 1999, I received a phone call that changed my life! A friend offered to send me to a conference in Tucson, Ariz., designed specifically for young adults with rheumatic diseases.

Upon arriving at the hotel, I was overwhelmed by the number of people registering for the event. For the first time in 13 years, I was part of a majority group. Those with arthritis out numbered the healthy people. What a feeling of comfort! Instantly I bonded with people who understood my needs and challenges. It was an amazing experience and an opportunity to make lifelong friendships! I’ve continued to attend conferences across the country to reach out to those who are newly diagnosed and to spend time with friends.

When I returned home from my first conference, I started a local support group called F.A.C.T. (Friends with Arthritis Coping Together). My initial thought was to offer a means of education and support to an age group defined as “young adults.” However, a few years into it, I realized I was almost too old to be in my own group, so I changed the motto, “If you feel like you’re too young to have arthritis, you are welcome to attend”. We are in our 10th year and the ages range from 20 to 80. In my opinion, the best thing about F.A.C.T. is the “F” – Friends!

Being around people with commonalities is important, especially if you have an on-going illness. With the Internet, there are many ways of finding support. Organizations offer educational gatherings across the country designed for the patient, as well as spouses and families.

If you have attended a support group or have participated in gatherings or conferences, please share your experiences. Was it good for you? Would you recommend it to others?