If you suffer from rheumatoid arthritis (RA), you are not alone. According to the Arthritis Foundation, 1.3 million Americans suffer from this chronic illness. Rheumatoid arthritis can strike at any age, leading to pain, inflammation, joint deformity, stiffness and disability. When RA strikes, the entire family is affected. It is very important for family members to understand and support those who live with RA. Managing stress, depression, strained relationships and changed expectations will help the entire family unit to maintain a sense of balance and normalcy.
Children With RA
Parents of children with juvenile RA (JRA) may have a very natural tendency to spoil and overprotect the affected child. This fosters dependency and undermines necessary steps toward independence. Young people with JRA need to be treated as responsible family members, with loving discipline and household expectations that fit their physical limitations. Parents must encourage their children to be active, interested and involved in activities with their peers that support their confidence and reinforce their interests and abilities. At the same time, they should appreciate the child's need for rest and allow the child to set her own limits on a daily basis.
Parents With RA
Moms and dads with RA often struggle to get through their day. Since the family priority is often caring for kids and making a living, the needs of a parent who suffers from RA may go unmet. This can cause tension in the home and worsening of RA symptoms for the affected parent. Children whose parents suffer from RA should be made aware of the parent's limitations, and should be given age-appropriate tasks to help the home run smoothly. However, children should not be made to feel as if they are caregivers for their parent. Parents with RA may need to accept a little less perfection in meals and home maintenance to reserve their energy for fun and relaxation with their family. Asking for help from friends and extended family upon those occasions when the going gets tough is certainly appropriate as well.
Spouses With RA
When two people marry, they promise to care for their spouses "in sickness and in health." However, with RA, often the sickness part comes to dominate the relationship. The healthy spouse often shoulders a disproportionate amount of the family burden, as the affected spouse focuses on simply managing the pain and fatigue. This can lead to lack of intimacy, resentment and depression within the marital relationship. It is important to make sexual intimacy a priority, and it may be necessary to plan ahead. Get help and rest on "date night" days, so energy is reserved for the spouse. A spouse with RA may also want to limit how much information is shared with the healthy spouse on a daily basis. Finding a sympathetic friend to listen to daily "venting" will free up emotional energy for positive interactions with a spouse. The healthy spouse needs an occasional break from reminders that his partner is chronically ill.
Support for RA
Families with RA need support. They often suffer from financial, physical and emotional stressors. Family, friends, religious communities and support groups can help provide a connection to ease the stress. Online support groups can offer a great way for RA patients to get the emotional outlet that they need. Fighting Fatigue Resource Links provides a list of potential support groups, and Rest Ministries provides a network of support for chronic pain from a spiritual (Christian) viewpoint. There are local networks of support for Jewish patients as well, ask your local congregation for a referral.
