Arthritis support groups:  A lot more than what meets the eye

When I was first invited to write this article about Arthritis Support Groups, I thought “Oh that should be easy, after all I’ve been involved with one for long enough and have reaped many benefits from it”. However, upon reflecting on the topic I realize that there is a lot more to a successful support group than meets the eye. So, first of all, I want to discuss “Why?” Why do you as a patient (or parent of a child) with arthritis need to belong to some sort of support group or network?

Purpose of an Arthritis Support Group

Life has saddled you with this disease – arthritis - whether you like it or not, and barring some miraculous discovery the likes of which we have not yet encountered, you are going to have arthritis as “your sidekick” for the rest of your life, so you had better make peace with it and learn about it. Education is not really the primary focus of a support group but it is definitely an access point. Some support groups occasionally invite specialists in the field of arthritis to speak to the group. But perhaps even more important than these visitors, you, as a patient (or a parent of a child with JIA), will meet other people who have a similar condition as you, who will share your concerns about medications and surgeries, exercise programs and general health activities, as well as ideas for coping strategies in your life, school, family and work situations.

Having arthritis can be very isolating, particularly if you are the only person in your family or circle of friends with it and it is impacting on your daily habits and activities. Plus you are not the only one suffering - your family is feeling the loss of your presence in many of the activities that you previously enjoyed together. Without even considering the pain, the fatigue or the loss of mobility, the loss of the ability to participate in your normal athletic or social activities as a result of arthritis is probably one of the most disheartening aspects of the disease. It can cause people to withdraw or become angry or depressed. Newly or recently diagnosed patients are perhaps the most in need of a support group to provide some encouragement, suggestions or help to meet the challenges of their new lives. But there’s a lot more to it than what meets the eye. The support group is a place where you can safely and freely discuss your problems in relation to your arthritis. You can learn that you are not alone; that other people have encountered similar situations, found solutions or survived the vagaries of the problems caused by arthritis and are now happy and productive human beings. A support group will also open up an entirely new circle of friends to you, people with whom you will be able to share experiences and information, provide mutual support and sometimes simply have fun.

Types of Arthritis Support Groups

Support groups have borne many different sizes and forms. In some cases, support groups have been known to morph, evolve, replicate and unfortunately, sometimes die. One of the best sources of information on developing an Arthritis Support Group in a community is The Arthritis Society.

It usually takes two or three committed individuals to start up a support group. And initially, a support group does not have to be large. It can simply take the size or shape of a weekly, biweekly or monthly Coffee/Tea Party in someone’s home, plus an invitation to the local arthritis community at large either posted in the newspaper or in the local GP’s or rheumatologist’s office. In fact, it is probably best to start small and build some solid friendships with people who are committed to ensuring that the group continues. However, when the group includes between 6-8 people who attend regularly, an away-from-home site must be sought out because it is simply too much to ask anyone to host such a large group on a regular basis particularly when everyone involved already has problems with fatigue.

One clever solution to this problem was provided in Vancouver by a young people’s group called the “Arthritis Social Crew”. This support group for young adults 18-30ish focuses on the transition of young JIA patients into adulthood. Also included are young adults with various forms of arthritis, lupus and fibromyalgia. The Social Crew meets monthly at various locations around Vancouver and the Lower Mainland for activities such as coffee, dinner, movies, bowling and so forth. They also make frequent contact by e-mail when arranging their outings. I have personally heard comments from some members that they wouldn’t miss one of these meetings for anything!

Other solutions to the location issue are to seek out the support of the local Community Health Center, the local Seniors Center or the local Library. Often these centers will have a small meeting or conference room that they will allow community minded volunteer groups to use provided they “leave it in the same shape they find it”. It is also wise for the group to try to make a “token” donation to this center at least once each year.

As a Support Groups grows in size, the focus of its activities also tends to evolve and at some point the group will likely change its name and become an “Arthritis Community Group”. Activities such as education, advocacy and fund-raising become more important, in addition to the social and support aspects of the group. Education is a crucial part of any support group. When the group has a regular attendance of over fifteen people, sharing circles become more difficult to organize and it is often better to try to find volunteer speakers to visit the group periodically and allow time for lengthy question periods. Of course, a social teatime must still be a part of every meeting.

In recent years, advocacy has become more important for arthritis patients within a Community Support Group. In case you are not aware of it, Mary Pack was the original Arthritis Advocate in Canada and it’s because of her work founding The Arthritis Society that the lives of arthritis patients in the last 50 years improved significantly and that research is now focused on this often ignored chronic disease. Advocacy also includes education and awareness of the issues that face arthritis patients as they try to maneuver through the Health Care System. So while advocacy does not always appeal to everyone in a Support Group, if everyone left the “job” to everyone else, it would not be long before arthritis would once again take a back seat to all the other diseases and there simply would be no funding for it in our Health Care System. We are always fighting the myth that “arthritis is just an old people’s disease” when it really is the most prevalent chronic disabling childhood disease and deaths from arthritis and its attendant conditions surpass that of HIV in Canada.

Occasionally a Community Group will not only grow in size and evolve, but will actually “morph” into an entirely new entity. This happens when the group adopts a new goal. For example, the arthritis group might decide to focus on the development of a center for the care of patients with arthritis where specialists can visit, ASMP courses can run, and meetings can be held without dependence upon the benevolence of any other local community center. Clearly, fund-raising would become the major focus for such an arthritis group. An example of this was the recent announcement by the Langley Community Group that, in future, the group would exist primarily as a fund-raising arm of their new Langley Arthritis Center and that all ideas in relation to supporting this worthwhile endeavor in their area would be most welcome.

Creating a New Arthritis Support Group

Creating a new arthritis support group should never be looked upon as a daunting task. The key to this is to keep it very simple at first. The groups which perish are usually the ones that try to do too much initially and the leaders burn out. I am currently the President of the Coquitlam “Hang Tough” Arthritis Community Group. It is a very large, active and thriving support group with approximately 90 members and an average turn out of 36 people at each monthly meeting. But it did not start out that way! Many years ago when the plan was first hatched, there were only two of us who arranged for the first evening meeting at the local Health Center. We called upon the few people who attended to help us set up an “official” Branch of The Arthritis Society and we managed to elect an executive – President, Vice President, Secretary and Treasurer. Within two short years, we had to close the group because there was no one to take over these positions and we were burning out. We were trying to do far too much - arrange speakers, locate meeting rooms, fund-raise, phone members, publicizing meetings, provide tea and goodies, keep accurate records of donations, provide receipts, do year end reports, etc. This is not the way to begin. However, from the ashes of our first attempt grew a new Support Group which began in Sheila Fulton’s home, was called “Hang Tough”, and was held during the daytime rather than the evening. I was personally disappointed that I could not participate because I worked during the day, however, there was still another support system which also grew from those ashes. I called it my Arthritis Lunch companions and two members of the original executive members met with me every two or three months on weekends or holidays just to talk over our lives and current arthritis issues. So in fact, more than one support network was spawned. I still meet with these ladies periodically and now that we are all “retired”, we also go to the monthly Coquitlam Arthritis Community Group meetings and have once again become more involved. But this time, we have many more helping hands. In addition to the executive, there are phoners, door greeters, a sunshine person, volunteers who prepare the tea and a volunteer goodies roster, advocacy leaders, a program coordinator, a publicist, a volunteer hours record keeper, ASMP leaders, and so forth. And in case of illness or vacations, there are “back-ups” for all these key positions. But most important, even in a large group, is that we all keep focused on supporting each other, through the ups and downs, the surgeries, the set-backs, the successes and the waitlists. We have one fund-raiser each year and monthly door prizes by donation. And, we have at least two potluck party meetings during each year which are entirely devoted to socializing, - we need our fun too.

While I have had my “sidekick” since I was twelve years old and have gotten to know it quite well by now, I realize that throughout my life, this sidekick has not always been a negative influence. It has introduced me to some wonderful people and provided me with insights and life experiences that few people encounter.