If you have rheumatoid arthritis, unless you’re marooned alone on a deserted island, you know that your diagnosis doesn’t just affect you, but also touches your family and friends and may impact how you interact with them.
RA is a chronic, progressive, autoimmune disorder that causes widespread damage to multiple organ systems throughout the body, but it’s most broadly known for attacking the joints, triggering painful, potentially disfiguring and disabling damage. It can also cause profound, sometimes overwhelming fatigue.
Although early, aggressive therapy with modern RA medications can drastically decrease RA’s symptoms and curtail much of its destructive effects on the body, the course of the illness typically fluctuates, even when it’s well-controlled. In fact, most people with RA experience intervals of remission punctuated by periods of increased disease activity. Moreover, between 10 and 20 percent of people with RA have active disease that persists throughout their lives.
[See: 7 Surprising Things That Age You.]
The pain and fatigue that commonly accompany a diagnosis of RA can affect a person’s ability to carry out everyday tasks both at home and at work. And, according to a 2012 Family Matters survey of partners of people with RA conducted by the National Rheumatoid Arthritis Society of the United Kingdom, these changes can have a profound impact on family and social relationships. Almost everyone surveyed — 93 percent — reported that their partner’s RA had been detrimental to their own mood or mental well-being, and 60 percent reported that it negatively affected their own social interactions.
According to Lauren Holleb, a licensed psychologist and assistant professor of psychology at Husson University in Bangor, Maine, these findings aren’t surprising. “[RA] can impact psychological well-being [of family members], which may place them at risk for psychological problems,” she says. RA can also cause family members to feel increased stress because they “worry about the well-being of their loved one,” Holleb says, “[and] partners of those with RA may have to take over responsibilities, [and] provide support and care.”
The results of the Family Matters survey bear this out. Ninety-two percent of respondents reported that they had to take on a larger share of the responsibility for running the household, and 46 percent felt that this change was significant.
RA can also negatively affect how couples relate to one another, with 41 percent of survey respondents indicating that RA caused difficulties in their relationship. And the disease appears to have an even greater effect on a couple’s sexual interactions. Almost two-thirds of those surveyed reported that their sex life had been negatively affected by the disease.
RA can also place new financial hardships on families, often because the person with RA cannot continue to do their job or must work shorter hours. Fifty-seven percent of survey respondents reported a negative or very negative effect on their household income.
A majority of those questioned also expressed concern about how the disease might impact their children. The Family Matters survey found that this concern is justified, reporting that 63 percent felt that the disease had a negative impact on their children.
According to Holleb, young children look to their parents for cues about how to handle the new normal. “They will likely approach the disease the way they see important adults in their life do,” Holleb says.
[See: 10 Seemingly Innocent Symptoms You Shouldn’t Ignore.]
To alleviate children’s concerns about the disease, it’s essential to be up front about it. “I always answer [my children’s] questions about RA honestly,” says Kimberly Steinbarger, a physical therapist in Bangor, Maine, who suffers from RA. Steinbarger, who is the director of clinical education in the School of Physical Therapy at Husson University, stresses the importance of making sure that children obtain correct information about RA. “I want their information to come from me, not the Internet,” she says. “Internet sources can be both unreliable and scary.”
When dealing with children, it’s essential not to focus on the ways in which RA can restrict one’s activities.
“Although there may be physical limitations to what a parent or caregiver with RA can do with their child, a focus on what one can do and the quality time they spend with their child is important and beneficial,” Holleb says. “Older children and adolescents may have more questions than younger children, and more help may be needed from adolescents as they are asserting their independence. Trying to maintain a balance where their efforts to help are rewarded and viewed as dependability and maturity, while allowing give and take, can be helpful,” she notes.
Steinbarger agrees. “Now that [my children] are teens, they know that they have to help me with some things around the house,” she says. “My 14-year-old son takes great pleasure in opening jars and packages when I ask.”
For the person with RA, having a social safety net is key in facing the challenges that come with the disease. “Strong social support at diagnosis predicts better functional ability and less pain 3 to 5 years later,” Holleb says. “Social support has also been found to protect against depressive symptoms,” she adds.
[See: 14 Ways Alcohol Affects the Aging Process.]
But if you have RA, finding the right balance when deciding how much to tell friends and loved ones about your disease isn’t necessarily straightforward.
“It’s difficult to walk that line between letting [family and friends] know how you are feeling and being ‘whiny,'” Steinbarger says. “So, a lot of us err on one side or the other. We either give too much information, which pushes people away because we seem to be really needy. Or, we keep silent and push through. That might work in the short term, but eventually everyone will wonder what happened when we hit the wall, which is inevitable if we don’t care for ourselves properly,” she says.
“I think it’s hard for those of us with a chronic disease to remember that our family and friends only know what we tell them, just like anyone outside our immediate circle.”
More from U.S. News
7 Surprising Things That Age You
10 Seemingly Innocent Symptoms You Shouldn’t Ignore
14 Ways Alcohol Affects the Aging Process
Rheumatoid Arthritis Can Have a Negative Impact on Family and Social Relationships originally appeared on usnews.com
