But when Micks, now a 42-year-old digital marketing strategist in Davis, California, began suffering numerous miscarriages, she got serious about finding a doctor who could diagnose and treat her. Last year, a new doctor, suspecting the neurological (but not fertility) symptoms might indicate multiple sclerosis (MS), finally scheduled an MRI. Before she could have the test, however, Micks got pregnant and this time it stuck, so she has pushed the testing off until after she weans her new son in the coming months.
Learning to Cope in a Healthy Way: It Takes Practice
Yet during all the years of stressful waiting, Micks has been doing something crucial: boosting her coping skills. Scientists call it resilience, or “the ability to flexibly adapt to challenges that come your way,” says Beth K. Rush, PhD, a neuropsychologist at the Mayo Clinic in Jacksonville, Florida. And nowhere is that resilience needed more than during the long and stressful wait for a diagnosis many people may encounter — especially with such hard-to-identify conditions like MS, rheumatoid arthritis (RA), endometriosis, and more. And of course, resilience is also needed during the years after you get a label when you’re living with the disease.
Think of It as Training: Resilience Is Like a Muscle, Not an Inborn Trait
While some people are more naturally anxious than others, resilience is a skill everyone can develop, emphasizes Rosalind Dorlen, PsyD, a clinical psychologist in private practice and at Overlook Medical Center in Summit, New Jersey. “It’s normal to feel anxious when you’re dealing with a health issue,” she says, and just recognizing that these feelings are okay is the first step towards developing a resilient response, Dr. Dorlen says. General stress-reduction techniques also help build good coping skills, including exercise, getting enough sleep, and eating healthy foods, she notes.
Does Carrying the Burden of Uncertainty Build Strength?
But developing resilience during a long period of uncertainty demands more than that. It requires you to consciously change your thoughts, as well as taking actions that move those thoughts along, she says.
Studies Show Resilience Matters for Long-Term Health, Well-Being
Having better resilience has been shown in a variety of studies to help people in physically trying circumstances feel better about their lives. A study of more than 1500 people with physical disabilities, published in June 2017 in the journal Archives of Physical Medicine and Rehabilitation, found those with more resilience reported a better quality of life than others in the same situations. People with RA who scored higher on a resilience scale were less likely to be depressed than lower scorers, according to a small Canadian study presented in November 2015 at the American College of Rheumatology annual meeting.
Keep Calm, Carry On — and Toughen Up?
Another small study, published online in July 2019 in the journal Arthritis Care & Research, looked at the resilience development process and strategies used to cultivate resilience in people with rheumatoid arthritis. Researchers concluded that people acquired resilience from learning to respond to new disease challenges, and identified 10 strength-building strategies, including social support, flexibility, and equanimity. And when more than 800 fibromyalgia patients at the Mayo Clinic were asked about their resilience and their symptom burden, greater resilience led to fewer bothersome woes, according to research published in the journal Stress Health.
Five Ways to Build Up Resilience While Seeking a Diagnosis
1. Change the Story You Tell Yourself
When Mallika Allu, 36, of Issaquah, Washington, was in the throes of serious gastrointestinal symptoms for a year and a half before she was finally diagnosed with ulcerative colitis, she was initially filled with confusion and fear. But after a while, Allu came to realize that ruminating on these emotions didn’t serve her, and she worked to become more optimistic. One mind tweak Dorlen recommends: Seek out the voice within you that is supportive. “Just as a parent tells a child, ‘It’s okay sweetheart,’ say that to yourself as often as possible,” no matter what’s going on, she says. Keeping things in perspective is another important way to boost your resilience, Dorlen advises. “Try not to catastrophize,” she says, especially since medical breakthroughs continually enable people to live long and productive lives. Micks helped maintain her perspective by writing a gratitude journal. “I started by jotting down basic things I could easily appreciate: seeing a bird, the shining sun,” she says. Even today, when her health situation gets her down, finding things to value “reminds me my life is still good, and it actually changes the way I physically feel,” she says.
2. Take Actions that Help You Cope With Present and Future Challenges
In addition to shifting your thoughts, actions can help shore up your coping skills, according to the American Psychological Association (APA). These include seeking out helpful information and taking charge of your health situation. Micks did both of these: She has read books and blogs by women with a variety of autoimmune conditions. From these she learned about changing her diet, and ultimately discovered she felt better when on the autoimmune protocol (AIP) diet. Allu, who received her diagnosis five years ago, has since taken up meditation, spends more time outdoors, and has altered what she eats, all of which have improved both her emotional responses and her physical health.
3. Make Slow, Steady Positive Changes, Experts Say
Rather than making huge changes at once, it’s fine to take baby steps, experts say. Instead of focusing on tasks that seem unachievable, the APA advises that you ask yourself, “What’s one thing I know I can accomplish today that helps me move in the direction I want to go?”
4. Avoid Activities That Trigger Negative Thinking
Keep in mind, however, that not all actions are good. Here’s what doesn’t work for resilience-building: Getting on the computer when you don’t have a diagnosis and seeking out the worst disease you might have or the bleakest prospects you might face is not helpful for building resilience, Dr. Rush says. “This can perpetuate a negative pattern of thinking that actually exacerbates stress” and reduces resilience, she says.
5. Connect and Find Your Tribe to Acquire Resilience
Resilience does not mean stiffening your spine and toughing out your situation alone, however. Reaching out to others who understand what you’re going through is critical to adapting to your situation. “That process of connection is known to strengthen resilience,” Dorlen notes. Sallie Sarrel is a pelvic floor physical therapist in Millburn, New Jersey, who went two decades before finally getting a diagnosis of endometriosis, despite years of terrible pain. For Sarrel, finding a group of people who understand has been key to coping. This has involved both opening up to friends who understand chronic pain, as well as Facebook groups like Nancy’s Nook Endometriosis Education.
Women Who Tend and Befriend May Be on to Something
In fact, the propensity to seek out others, which is more common with women, may be an underappreciated path to resilience. Studies of resilience have sometimes reported that men have the upper hand, notes an article published in September 2016 in the Journal of Psychiatric and Mental Health Nursing. But the authors say this may be because the surveys used to measure resilience typically skimp on questions about social support and connectedness.
You Can Use a Diagnosis Process as an Opportunity for Growth
You’ll know you’re becoming more resilient when you can look at your situation and know that whatever hardship you are facing, the experience is helping you grow, the APA asserts. The long search for a diagnosis, as well as experiencing a chronic condition, has been known to improve relationships, boost a person’s sense of strength, develop their spirituality, and heighten appreciation for life. “You are resilient when you can say, ‘Whatever happens now, I can cope with this, and something good may come out of it,’” Rush observes. This is a place Micks is finally coming to. “I used to be afraid — ‘What if it’s something terrible?’ — but I’m not in that space anymore. Whatever is happening is happening in my body,” she notes. Now she is just hoping some doctor can give it a name and start her on the path toward treatment.
