“The analysis of resilience-building strategies was inspired by the patient stories that I have had the chance to hear and study — first during my doctoral studies, and then with this study of burden of disease in rheumatoid arthritis,” says Yomei Shaw, PhD, research fellow at FORWARD, The National Data Bank for Rheumatic Diseases in Wichita, Kansas, and one of the authors of the study. “I was really inspired by the strength of these people and I wanted to understand how they developed their strength.”
How Do You Respond to Challenging Situations?
For the study, 18 patients between ages 27 and 80 were interviewed. The patients had lived with RA for a period between 5 and 41 years. Researchers grouped the patients’ responses to challenging situations in three stages:
Examining Life With RA From the Patient Point of View
“The interviews were originally conducted for the broader objective of learning about patient’s perspectives on living with rheumatoid arthritis,” says Dr. Shaw. “The topic of resilience emerged during our preliminary analyses of the interview transcripts, so we decided to go more in depth and examine the patients’ narratives through the lens of resilience.”
10 Ways People Living With RA Build Resilience
Researchers determined that patients used at least 10 strategies to develop resilience: perseverance, exchanging social support, pursuing valued activities, flexibility, positive reframing, acceptance, humor, avoiding threatening thoughts, equanimity, and maintaining a sense of control. “The ten strategies were identified based on our analysis of the patient stories in our interviews; they were not previously recognized,” says Shaw. “It is certainly possible that patients use other strategies that we did not cover. I think it is important to learn more about the resilience development process in order to better support patients. Resilience appeared to be especially important in facing frequently recurring or ’looming’ challenges, such as having to adjust career plans or face losing a valued activity.”
How 10 Resilience-Building Strategies Can Help When You Have RA
Seth Ginsberg, founder of CreakyJoints, a digital patient-driven community providing support for people with arthritis and their families, further explained the importance of the resilience-building strategies identified in the study.
1. Perseverance
“There’s an inevitable uphill battle when you are first diagnosed with a condition like RA,” Ginsberg says. “Perseverance is needed on two fronts. The first is medical: How do you live your healthiest life? It’s an ongoing mission to not only work out your medication with your doctor, but your diet, exercise, sleep, and everything else. Second, RA patients need perseverance in dealing with insurance coverage. Today’s healthcare systems do not make it easy for people with chronic conditions. You need perseverance to take these battles head on.”
2. Exchanging Social Support
Social support is an important tool for every person with RA, but Ginsberg cautions that not every support group may be right for you. “Social support can sometimes quickly turn into a pity party, and that doesn’t help,” Ginsberg says. “Seek out positive support from a group of people that you can relate to. The problem with some support groups is a wide age difference between the people in the group and the person going for the first time, and that can be very discouraging. There can also be difference in attitudes and perspectives that might be problematic. Look for peer groups outside the healthcare world with relatable people that can still help. What is your hobby? Search out a support group around that.” To find support groups online or near you, use the locator tools on CreakyJoints.org or the Arthritis Foundation’s Live Yes! Connect Groups.
3. Pursuing Valued Activities
Having passion for a favorite activity can help stave away the depression that sometimes comes with an RA diagnosis. RA patients know all too well about the physical limitations that can interfere with various physical activities. But patients should try to modify any activity they can to keep enjoying it. “Go for the yes,” Ginsberg advises. “It’s all about changing the story we tell ourselves. Go from being a no, can’t, won’t person to a yes, will, can person. It’s up to each individual to take ownership of that. This is sometimes where family can play a huge role. Bringing supportive family into the equation can be helpful and may catalyze that change in storytelling.”
4. Flexibility
Every person living with RA has good and bad days due to the nature of the disease. Ginsberg goes one step further. “There could even be good parts of a day and bad parts of a day,” he says. “Tomorrow is not promised to anybody. We have to live our best and to the promise we make ourselves, whether or not you have a chronic disease. Flexibility means adjusting those expectations so that you can persevere through the bad days and celebrate the good days.”
5. Positive Reframing
“When patients have RA, it’s ingrained in their messaging both to themselves and to others,” Ginsberg says. “I always encourage people to develop an elevator pitch to themselves and to others to educate people on what they are going through with their disease. You can’t expect people to have empathy for what you are going through if other people don’t understand. Positive reframing is also another way of saying optimism. People with chronic disease can often have a difficult time framing things positively because of the chronic nature of the disease. A positive mindset goes a long way in preventing you from catastrophizing things and looking at everything as the worst-case scenario.”
6. Acceptance
Ginsberg understands that people with RA can often live in a state of denial. He offers them another way to think about acceptance of the disease. “Understand that first and foremost, you can live a normal life today,” he says. “Twenty years ago, you couldn’t have said that. People with RA should not settle, and acceptance should not mean settling for good enough. When it comes to treating RA, people have to have high expectations. The bar has to be high for what they will accept as treatment, because there are so many options with so many good outcomes. This means you have to deal with the mismanagement or undermanagement of your condition. You need to persevere through that suboptimal care and communicate with your doctors about your dissatisfaction level. Communicating what you can and can’t do may demonstrate the need for better care. I need better care because I can’t do what I love to do.” RELATED: Rheumatoid Arthritis: What Is Acceptance and Commitment Therapy?
7. Humor
Having a sense of humor about a chronic illness can be difficult, but it is absolutely necessary. “Laughter is the best medicine and it has a zero-dollar copay,” Ginsberg says. “Humor puts everything in perspective for you. Bringing humor to the table creates a positive tone and sets a positive environment for all further discussion. Think about it in personal terms. Do you have better energy when you are with someone that is funny or someone that is always angry?”
8. Avoiding Threatening Thoughts
Once again, Ginsberg implores the importance of perspective and a positive attitude. “We all have the devil on one shoulder and the angel on the other,” he says. “What we have to do is make sure that the negative thoughts don’t get to share a voice. People with the condition have to constantly remind themselves that there are a lot of health cards you can be dealt. RA hurts and it is terrible, but it’s not stage 4 cancer. It’s all context. “RA patients live in fear every day. When you get an invite to a party or are going out on a date, the fear of not knowing if you’ll feel up to that is a constant and real emotion that people with RA are absolutely entitled to have. Planning as best you can provides the empowerment and resilience to persevere. This also comes back to the story we tell ourselves and the stories we tell others. Others should have sensitivity to our situation, because we’ve educated others to our situation. It starts with setting up those expectations of others. “And having a game plan of what happens when you wake up and don’t feel well. It also requires a macro game plan of telling your doctor, ‘This is the third time I tried to do something and I didn’t feel well. What can I do differently to feel better?’”
9. Equanimity
The ability to keep a level head while dealing with a chronic disease is hard, but it is critical. “Having a plan is so important because it keeps you from tipping one emotion over another,” Ginsberg says. “Everyone should have a mental calming exercise in their pocket — a meditation, a song, a mantra. Putting that together with some breathing, and having an action plan to deal with things is vital.”
10. Maintaining a Sense of Control
Regardless of whether or not you are dealing with RA, Ginsberg believes the mind and the body are strongly connected. “We have to recognize this, respect this, and leverage this,” he says. To Ginsberg, this means taking control of your treatment by forging the best possible relationship with your doctor, to ensure you are doing everything necessary to feel your best. “It’s really on the patient’s shoulders to hold the doctor accountable and put them in the role of medical director. It would be as if the doctor is the coach and the patient is the quarterback. That’s the level of control every patient deserves to feel.”
