Rheumatoid arthritis is a chronic illness, so it’s always going to be a part of your life, whether you’re having a pretty good, not-so-hot or really awful day. What can help you cope?
Linda, a Vectra Patient Ambassador who lives with RA, says that strong social support is the key:
“I am very lucky in that I have a wonderfully supportive family. We are retired, and my hubby reminds me to take things in chunks,” says Linda. “I can’t get everything I want done when I want it done. My kids, when I’m with them or they are here, also remind me to slow down. My two sisters and I take a weekend every year to ourselves. They also know that I can’t do it all and have me set the pace. Without family, I couldn’t do it.”
Just as Linda says, RA may make you feel that you can’t “do it all” as you once did. Ask yourself this question: Should anyone be expected to do it all? Doing what you can, taking care of your body, and conserving your energy for the tasks that matter most to you are worthwhile goals for anyone. They’re especially useful for you in your life with RA.
Where do you find social support? Here are some possible sources:
- Spouse or partner
- Family members
- Spiritual community, like your church, temple or mosque
- Your healthcare team: doctors, nurses, therapists
- RA support groups (more on those later)
What Exactly Is Social Support?
Social support may be when loved ones help you deal with tasks, comfort you, listen to you, cheer you on or cheer you up. They may just listen to you talk about your RA symptoms, your concerns about your diagnosis, your recent appointment with your rheumatologist or the possible side effects of your RA medications.
If you’re newly diagnosed with RA, you may need support to find solutions to physical challenges, such as community resources, support groups or assistive devices to help you complete tasks at home or at work. You may also need someone who can just listen to you express your feelings about your diagnosis without judgment.
If you’ve had RA for a while like Linda, people in your life may be used to your ups and downs with RA. They may know that you occasionally need to take a break on excursions that involve a lot of walking. They may be accustomed to you canceling plans because of an RA flare.
Even if your RA is in remission or if you’ve developed coping strategies over the years, you can have a flare, a setback, a change in response to your treatments or an unexpected test result. If your Vectra Score rises, you may be worried about joint damage—whether you’re relatively new to life with RA or someone who’s had the disease for years.
Even though a new RA diagnosis or flare can be a traumatic experience for you, social support can actually help you grow emotionally and develop stronger coping skills. In a recent study of 250 adults with RA, people who had social support, including spirituality-focused support, showed improved levels of post-traumatic growth (PTG)1. PTG is a term that means, after a life trauma, your relationships grow closer, you discover how strong you really are, and you appreciate your life and loved ones more than ever.
Social support can be physical, emotional or even virtual.
Physical support may be a loved one helping you do the laundry, style your hair, or carry your groceries into your home and help you put them away. It can be a coworker helping you load the copier with a new stack of paper because it’s heavy to lift alone, or job sharing with you so you have less hours at the office each week.
Emotional support may be your family or friends just listening to you vent or express your concerns about RA’s potential impact on your future. It may be loved ones cheering you on as you cope with your new diagnosis, reassuring you that you will be able to have kids, work, play sports, travel or enjoy your favorite hobbies with RA.
Virtual support is accessed via technology, such as online RA support groups or discussion threads, or private Facebook groups for people with RA. Telehealth, services where you interface privately with a healthcare professional or therapist who can answer questions about your RA or offer you support, is growing in use in many health networks too. Does virtual support really work? A 2015 study showed that online, virtual social support tools did help people with RA cope with the stress of living with the disease.
Positive and Negative Support
There is such a thing as negative or problematic social support too. Maybe your family member dishes out “tough love” that feels more like criticism. People may give you well-meaning advice that’s unsolicited and insensitive: unproven therapies for joint pain, “cures” for RA they read about online, or comments about “mind over matter.” If you mention that you’ve been diagnosed with RA, and they respond that they often wake up with a crick in their neck, it can feel like they’re downplaying your serious, chronic disease. That’s negative support. It can do more harm than good.
In one well-known 1991 study of 101 people with RA, researchers found that positive social support lowered patients’ levels of depression, while negative support or interaction increased depression3. So the type and quality of social support you get may have a clinical impact on how you feel and cope with RA.
Get social support when and where you need it—do what works for you. When you live with RA, there may be times when you don’t want any social interaction at all. Linda adjusts her activities to suit how she feels with RA. When she’s stressed or overwhelmed, she says she takes a break from social activities to read or watch TV. “I’m okay with sitting out life for an hour or a day or a week if I need to,” she says. Social support may be your family and friends giving you space to chill, rest and recharge.
Exercise can be social support too. Physical activity can help you manage RA symptoms. Regular exercises to improve joint range of motion (ROM) can help you maintain joint function and flexibility. Group exercise like workout classes can a form of emotional support too, says Linda, who goes to Silver Sneakers classes twice a week. “To be surrounded by people my age who move at my pace is amazing. I always leave feeling so upbeat.”
Vectra Score helps you track your RA disease activity over time through an objective measure that complements your doctor’s exam and your own assessments. Talk about your score changes and any symptoms you have with your doctor at each appointment. Go over positive steps you can take to help you cope with your RA: Exercise, stress management, social support and more.
1. Rzeszutek M, Oniszczenko W, Kwiatkowska B. Stress coping strategies, spirituality, social support and post-traumatic growth in a Polish sample of rheumatoid arthritis patients. Psychology, Health & Medicine. 2017;22(9):1082-88. 2. Kostova Z, Caiata-Zufferey M, Schulz PJ. Can social support work virtually? Evaluation of rheumatoid arthritis patients’ experiences with an interactive online tool. Pain Research and Management. 2015 Jul-Aug;20(4):199-209. 3. Reverson TA, Schiaffino KM, Majerovitz SD and Gibofsky A. Social support as a double-edged sword: The relation of positive and problematic support to depression among rheumatoid arthritis patients. Social Science and Medicine. 1991;33(7):807-813. 4. Cooney JK, Law RJ, Matschke V, et al. Benefits of exercise in rheumatoid arthritis. Journal of Aging Research. 2011;2011: 681640.