Social Support for Psoriatic Arthritis
Whether it’s a formal group or a circle of friends, getting social support helps you cope with PsA.
Terri Ebaugh’s small town of Payette, Idaho, doesn’t have in-person support groups for psoriatic arthritis (PsA), so this 36-year-old mom of three teenagers goes online. There she can “talk” with others who relate to the day-to-day challenges of living with the unpredictable condition. Checking in on her laptop is also easier logistically for Ebaugh.
“The swelling and stiffness in my joints, especially my hands and ankles, hurt so much sometimes that it’s better for me to have a support group online because often I have to cancel scheduled events,” she says.
Research confirms that the understanding and empathy people with PsA receive from talking to others with the same condition helps them feel reassured and more connected. Family members and friends can also be important sources of support, whether as outlets for venting on bad days or for help with errands when pain and fatigue get in the way, says Alex Ortega Loayza, MD, assistant professor of dermatology at Oregon Health & Science University’s Center for Psoriasis and Psoriatic Arthritis Excellence in Portland.
“Medical management is only one part of treating psoriatic arthritis. Getting help with the significant emotional impact of psoriatic arthritis is a key piece to coping well with this condition,” he says.
Care For Your Emotions
PsA’s toll is more than physical. “Psoriatic arthritis is a disabling disease, affecting physical function with pain and joint damage, and often leading to depression and a lack of social participation in general,” says Dr. Ortega Loayza.
A 2014 study in The Journal of Rheumatology found up to 22% of people with PsA had depression and 36% lived with anxiety. But research also shows getting emotional support can help protect against emotional distress.
A 2014 Rehabilitation Psychology study that followed people with inflammatory arthritis found having more support – whether from family and friends or from formal support groups – was associated with less depression. The link was strongest in those whose disease was most disabling.
This association works in the opposite direction, as well. Research has found that for people with inflammatory arthritis, having low levels of social support is connected to greater pain and more functional problems.
So how can just talking or spending time with someone help stave off mental and physical distress?
Engaging with supportive people helps improve your outlook and coping skills, something research has linked to less pain and fatigue in inflammatory arthritis, says Anna Chisholm, PhD, a lecturer in health psychology at the University of Liverpool in the UK. Chisholm’s research has identified social support as an important, and often unmet, need for people with PsA.
“Finding the right support can help people recognize their patterns of thoughts, feelings and behaviors that might be helping or hindering them from coping with the condition or the distress associated with it,” she says.
Ebaugh, who’s had to give up gardening, bicycling and horseback riding since her diagnosis six years ago, notes, “It helps to know I’m not alone and to connect to others who understand how I’m feeling or what I’m going through.”
Building Your Support Circle
Your first avenue for finding support should be your rheumatologist or primary care physician, says Chisholm. It’s important to let your doctor know if you’re struggling emotionally, something her research shows people often skip.
Some people find it hard to ask for help, whether from a loved one or their doctor. “Psoriatic arthritis can mean a loss of independence, and it can be hard to then seem more dependent by asking for help,” says Dr. Ortega Loayza. “But all of us need help at some point in our lives.”
Dr. Ortega Loayza often asks his PsA patients to bring a family member or close friend to appointments so he can explain psoriatic arthritis. “Once they understand that it’s a serious condition that can at times be disabling, they typically want to be more supportive.”
If your doctor is part of large practice, the organization may offer its own support resources, which could include groups led by other patients or health professionals. Otherwise he or she can help you identify other organizations that provide these services.
The Arthritis Foundation connects people around the country with local, in-person groups through Arthritis Introspective. Attending an Arthritis Foundation conference or event is another way to meet others with your condition and learn more about PsA. An internet search can lead you to online or in-person support groups as well.
You may have to check out a few groups before finding one that fits your needs and personality. In general, look for those that:
- Focus on PsA or inflammatory arthritis.
- Have an atmosphere in which you feel supported, safe and comfortable.
- Have active members who’ve been taking part for a while, so you know you’re joining a stable group.
- Also have newbies, so you get a range of opinions and perspective.
Arthritis Support Networks is an Arthritis Foundation resource that helps adults living with arthritis and rheumatic diseases thrive.
The peer-led, local support networks provide their members with opportunities to make connections, be empowered and educated. In addition to local community interaction, Arthritis Support Networks hosts a national conference called “Annual Gathering” each year that is equal parts educational and social.