How to Start an RSI Support Group

Judy Doane
RSI Support Group of San Francisco
(415) 474-7060

The large information gaps that exist for people with injuries that tend to heal very slowly create the need to seek out others with similar injuries and to find resources. The desire for a regular meeting develops in the community and one or more persons then initiate the process of organizing meetings. The composition of the group that attends will depend largely on the community from which it springs. The following is an outline that incorporates some of the typical elements of that process.

• Find a co-leader or others willing to share some of the work, which will be especially important as the group grows.

• Develop a concept for the group. Because of the need for information, many groups choose to focus on educating themselves through meetings with speakers, as well as providing mutual support. Much of the support is provided informally, through the realization that others are experiencing the same symptoms, frustrations, and obstacles. Education empowers; support validates.

• Educate on:

1. Causes of RSI

a. Ergonomics

b. Work habits

- Posture

- Unnecessary muscle tension

- Mental states/attitudes (for example, perfectionism, low self-esteem (can't do enough to ever be worthy), rescuer, a "doer," needing to be in control

- Overworking: performing hand-intensive work and going home to do more hand-intensive work

c. Diminished mind-body connection, which leads to missing early signals

d. Lack of upper-body fitness and/or proper daily physical preparation for work

2. Most effective treatments for RSI

3. How to cope with RSI (i.e., keep a daily written log of pain/recovery process, look for alternative methods of accomplishing tasks)

4. How to make use of a support group

5. Very slow pace of healing for many people

6. Need to educate others (RSI is not well understood)

7. Ways to seek information on your rights (libraries, websites, other injured worker groups, COSH groups—labor-affiliated coalitions on occupational safety and health—publishers such as California’s Nolo Press, which specializes in self-help law)

8. Advocate for yourself and other injured people by affiliating with other workplace safety interest groups, such as labor unions and COSH groups

• Procure a space, pleading a good cause: unemployed injured workers:

Community center
Hospital meeting room
Nonprofit organization
Labor union
Senior center
Library
Church hall
College facility

• Create a central contact point—your phone number and/or the co-leader’s or that of an organization willing to sponsor your meetings—and include on the meeting flier. As the group grows and becomes more widely known you may want to consider setting up a hotline featuring different mailboxes with various messages to inform callers about meeting details, local resources, etc. This will help others, and also relieve the coordinator(s) of the need to handle so many phone calls.

• Line up speakers:

The benefit to speakers is that exposure may bring them clients, contact with what people's needs and concerns are, and credit for doing community service work.

Types of speakers: various types of doctors who treat these injuries, such as neurologists, osteopaths, occupational medicine specialists, orthopedists, physiatrists (doctors who specialize in physical medicine and rehabilitation); alternative healers (doctors of chiropractic, licensed acupuncturists, homeopaths, naturopaths); attorneys; stress reduction/meditation leaders; vocational counselors and rehabilitation specialists; physical and occupational therapists, as well as movement specialists (for example, teachers of the Alexander Technique or Feldenkrais practitioners); chronic pain specialists; ergonomic experts; individuals who have successfully dealt with their injuries, moved on with their careers, and found new ways of working and giving meaning to their lives.

• Get the word out:

Create a flier with recognizable design elements to advertise/announce the meeting. Choose a time that accommodates both working and nonworking individuals.

Post flier in local groceries, laundromats, libraries, coffee shops, local colleges or universities, other community bulletin boards.

List meetings in neighborhood newspapers.

Take or mail the flier to physical therapy clinics, hand therapy centers, offices of doctors who treat these kinds of injuries, local colleges, hospitals, unions, workers' groups, massage therapists.

Begin a members’ phone and mailing list at the first meeting.

Contact or make presentations to community groups and meetings of various kinds of treatment professionals.

• After the group has started, make a list of members willing to give and exchange support with others. Suggest at each meeting that people meet for coffee, take walks together, exchange phone numbers, and keep in touch between meetings.

• Facilitate meetings and act as a resource person for the group.

• Keep resource materials on hand and up-to-date:

Books (such as "Repetitive Strain Injury: A Computer User’s Guide" by Pascarelli and Quilter; "Conquering Carpal Tunnel Syndrome and Other Repetitive Strain Injuries: A Self-Care Program," by Sharon Butler)

Articles

Adaptive equipment catalogs

• Tape-record meetings (with speakers’ permission) and offer the tapes to new members for subsequent listening.

• Develop relationships with doctors who understand how this type of injury is different from sudden injuries and macrotrauma (much slower to heal, and more likely to respond to alternative treatment), and who listen to and learn from their patients, as well as treat them with compassion. Ask them to speak to the group and to refer injured people to the group.

• Find community resources that can help people who are unable to work for a while: food giveaways (i.e., Salvation Army: box of food in exchange for community service and a few dollars), low-cost mental health clinics, second-hand clothing stores.

• Maintain contact with other support groups.

• Use support group funds to subscribe to appropriate ergonomic and RSI newsletters.

• Produce a special event featuring adaptive devices, or another event appropriate to group members, and get a local hospital or university to sponsor it. Include Good Grips tools and kitchenware; voice recognition software, ergonomic office equipment, headsets, computer programs that save keystrokes or give timely exercise break warnings; and other devices that would be helpful to your members, such as ergonomic building and gardening equipment, etc.

About the Author
Judy Doane, M.S., C.R.C., has seven years of personal and professional experience with RSI. She co-founded the RSI Support Group of San Francisco (1992), which she now coordinates. As a rehabilitation counselor, Judy worked extensively with RSI reentry students at City College of SF, currently lectures on preventing and coping with RSI, and provides private consultations.