How RA Impacts Emotional Well-Being
Rheumatoid arthritis can do a number on your mental state. Here, how to fight back.
When 35-year-old Stefanie Remson gave birth to her first child, her hands were so stiff she could barely hold him. The Las Vegas-based mom sought help from several medical providers, who diagnosed her with obesity, postpartum depression, and fibromyalgia. Feeling certain that there was something else going on, she ordered her own labs and took the results to her primary care physician who was finally able to diagnose her with rheumatoid arthritis (RA).
“When I was first diagnosed, I was absolutely devastated,” says Remson, who is a family nurse practitioner and a rheumatoid arthritis coach. “Not only because of the disease itself, but I could not believe that I was in the medical field and still could not find reliable support or resources.”
Rheumatoid arthritis, which affects 1.5 million Americans, comes with any number of physical effects, including inflammation, joint pain, and cartilage loss (to name a few). But what often goes overlooked are the emotional challenges that this chronic condition fosters.
“Almost every day, I see patients who have been on a journey trying to figure out what is wrong with their bodies,” says Magdalena Cadet, M.D., a rheumatologist and associate attending at NYU’s Langone in New York City.
It can be a struggle to first seek out help, then receive a diagnosis, and finally figure out how to incorporate a "new normal" into your life. The emotional hurdles are high with this chronic condition. We asked those living with RA to share some of their biggest challenges.
Emotional Challenge: FOMO (Fear of Missing Out)
“The dissonance between what I want to do and what I can do has been a challenge from day one,” says 35-year-old Deb Wenof-House, a visuals director in New York City. Wenof-House was diagnosed 20 years ago and says that while the fear of missing out is very real, there are days she’s in too much pain or too fatigued to get out of bed or leave her house. “It’s helped me realize what and who are most important to me, who makes an effort to understand this disease, and it makes me savor the periods of time when my symptoms are mild.”
But it’s not all bad days for Wenof-House.
“RA has strengthened my character and enriched my life in more ways than I can express,” she says, sharing that it’s made her a more empathetic person, allows her to focus on her true goals, and has pushed her to live in the moment—including feeling less guilty about taking naps.
“The best thing by far that's come out of my experience is meeting my husband. On the 10th anniversary of my diagnosis, I decided I wanted to do something to celebrate my body, so I began to do spin and long-distance cycling,” she says. “I rode 525 miles from San Francisco to Los Angeles twice with the Arthritis Foundation's California Coast Classic, and eventually joined a local cycling club, where I met my husband.”
Emotional Challenge: Being There for My Family
For Remson, the biggest challenge has been raising her family.
“The physical demands and limitations combined with the unknown and unpredictable future can really mess with your mental state,” says Remson, who also shares her RA experience and advice on Instagram. “Having little kids is hard enough for anyone, and RA really seemed to over-complicate it.”
But Remson knows that the best way to overcome these struggles is to try and stay in control of her emotions.
“The same techniques that I teach today to manage the mind are the same techniques that helped me through my darkest times,” she says. With her clients she focuses on regaining emotional control, since physical control might not be possible with RA.
“Managing your thoughts to manage your emotions is truly a superpower,” says Remson.
Emotional Challenge: Frustration Over Flares
“It has taken me years to understand my body and health and what things work to minimize my flare ups,” says 30-year-old Laura Escalante, a case manager with the city of Denver. Escalante has experienced knee pain since her teens, with symptoms worsening once she reached her 20s.
For her, what works best is eating healthy, sleeping well, exercising, managing her stress, and getting acupuncture treatments.
“But I can’t control everything or predict when all my flare ups will happen. It can be so debilitating and in turn affect my mental health,” she adds.
When an unexpected flare up does occur, though, Escalante says she reminds herself that all she can control is her reaction and how she treats her body.
“I like to think of it as having a really bad cold and just part of life, comforting myself both mentally and physically through it until it naturally passes,” says Escalante, who was first diagnosed a little over a decade ago. The first few years were especially tough. “I was fighting the idea of having to live with an autoimmune disorder rather than adapting to it. Now I am so aware and in-tune with my body that I feel like I have reached my healthiest life. All the precautions that I’ve taken to avoid flare ups have really been steps to living a healthier life,” she says.
Escalante adds that newly diagnosed folks should take it slow and be patient with themselves.
“Our bodies are functioning in a new way and it takes time to get to know the new you. You know your body better than any doctor or test, so when you’re frustrated, step back, take a deep breath and listen to what your body is trying to tell you,” she says, adding that individuals may want to keep notes in order to notice any trends. “And always reach out for help.”
Emotional Challenge: Anxiety Over the Future
Dr. Cadet reminds anyone who’s just been diagnosed to not panic, and to instead educate themselves about their condition. She recommends finding information by way of The Arthritis Foundation, Creaky Joints, and the American College of Rheumatology.
She also reminds individuals to become their own best advocates, and to partner with their rheumatologists.
“It is important for the patient to take an active role in his or her care and keep track of symptoms, triggers, and factors that can help improve physical and emotional function,” she says, recommending patients take lists of questions to their doctors, focusing on one or two issues at a time so as not to get overwhelmed. She also recommends potentially bringing a friend or family member to doctor's visits, and to make regular appointments to foster the patient/physician relationship.
“It is (also) important for the physician to ask about emotional and mental health and screen for depression that can be prevalent with chronic conditions,” she adds.
Wenof-House reminds recently diagnosed individuals to take care of their mental health. “Seeing a therapist regularly has made all the difference,” she says. “Do not tackle this on your own; you are no less strong if you accept support from those who love you.”
- Arthritis Statistics: Arthritis Foundation. (2019.) “Arthritis By The Numbers.” arthritis.org/getmedia/e1256607-fa87-4593-aa8a-8db4f291072a/2019-abtn-final-march-2019.pdf