Out of nowhere, she got hit with what seemed to be a bad flu. She had a low-grade fever, extreme fatigue, and a flushed face that looked like sunburn. And she couldn’t kick it. The year was 2002, and the mystery symptoms turned out not to be a virus.
Diagnosis: ‘It Took a Long Time to Realize This Was My Life’
One week of illness turned into two, and Hester began to feel worse. She’d wake up from a 10-hour nap only to get some water, eat a little, and go back to bed for another 10 hours. Finally, her mother convinced her to see a doctor. Her doctor suspected it was an autoimmune issue and sent her to a rheumatologist, a specialist who treats several conditions affecting the joints, muscles, and bones. After blood tests, a look into her family history, and more symptom tracking, Hester was diagnosed with lupus. Hester had an aunt who, in 1968, at 25 years old, passed away from lupus, but there was no other history of autoimmune disease in the family. Hester was surprised by her diagnosis, and shocked to learn that her symptoms were considered fairly severe. Because lupus was attacking her kidneys, her doctor prescribed treatment that included six chemotherapy sessions and several blood transfusions. She had to take steroids, which caused significant swelling in her face and throughout her body. The side effects of chemo — including hair loss and worsening rash — made her feel like a stranger to herself, she says. “The whole time, it felt like mental gymnastics,” she recalls. Lupus changed all her plans, she said. “I was supposed to be young and healthy and getting started on my dream career. Now, not even a month later, I wasn’t able to take care of myself without my mom’s help.” The emotional toll felt as devastating as the physical one, she says. “I spent a long time in shock,” Hester says. The side effects were unexpected, she says. “There was a part of me that just kept hoping it would all be over, like a nightmare, and I would wake up back in my life. It took a long time to realize this was my life.” Now after nearly two decades of living with the condition, Hester says she is past the shock, but she’s still on a personal journey to understand the way lupus affects her. She says she hopes others can learn from her experience.
Lupus Causes Side Effects That Range From Uncomfortable to Life-Threatening
Lupus is a chronic autoimmune disease; it is much more common in women than men and usually develops between ages 15 and 44, according to the Centers for Disease Control and Prevention (CDC). In people with lupus, the immune system (responsible for fighting off infections) attacks healthy organs. Currently, there is no cure, and it can affect almost any part of the body. For Hester, lupus caused kidney damage (a common complication). In others, lupus can affect the liver, lungs, or heart. Complications can be deadly if not well-managed. Other common symptoms of lupus include muscle and joint pain, fever higher than 100 degrees, rashes, chest pain, hair loss, mouth sores, sun or light sensitivity, extreme fatigue, memory problems, and dry eyes. Data published in January 2021 in the journal Arthritis & Rheumatology estimates that just over 204,000 people in the United States in 2018 were living with systemic lupus erythematosus, the most common type of lupus (and the type Hester has). The three other types of lupus are: cutaneous lupus, which affects only the skin; drug-induced lupus, which is caused by high doses of certain medications; and neonatal lupus, which affects fetuses but clears up about six months after birth. RELATED: 5 Things Selena Gomez’s Battle With Lupus Has Taught Us About the Autoimmune Disease
Managing the Emotional Toll of Lupus Is Managing Lupus
Hester says she learned early on that managing her emotional health (and not sweeping wayward feelings about her condition or treatment under the rug) actually helped her better cope with the physical symptoms she was experiencing. Indeed, managing mental health goes a long way in managing lupus and the pain associated with flares, says Medhat Mikhael, MD, a pain management specialist and the medical director of the nonoperative program at the Spine Health Center at MemorialCare Orange Coast Medical Center in Fountain Valley, California. RELATED: Lupus, Emotional Stress, and Depression: What You Need to Know There’s even some evidence that stress, particularly the chronic type that often comes with the burden of managing a chronic condition, can make it harder for the body to cope with pain, Dr. Mikhael says. Stress affects the neural and endocrine systems, which are both central in pain management, according to a review published in December 2015 in the Malaysian Journal of Medical Science. Moderate stress can actually be useful, the researchers note, as it causes activation of the sympathetic nervous system (commonly known as the “fight or flight” response) — which can increase your pain tolerance temporarily. But when stress becomes chronic, the body starts to actually become more sensitive to pain, according to the review. There’s no one treatment for lupus; it’s a condition for which a combination of medications and lifestyle adjustments usually yield the best results for patients, says Michelle Ogunwole, MD, a general internal medicine fellow at the Johns Hopkins University School of Medicine. While certain prescription drugs are usually a mainstay of treatment, the adoption of healthy habits will go far in improving physical and emotional well-being, she says. “That means eating nutritious food, getting quality sleep, lowering stress, and increasing activity. These have all been shown to have an impact on chronic disease.”
5 Nonnegotiable Self-Care Practices for Managing Lupus
For Hester, once she got past her initial shock over the diagnosis and early treatment, she realized that she faced a choice: Either mourn for the life she had to give up, or learn to navigate through the challenges of a chronic illness. She chose the latter. But it’s far from easy. “Almost 20 years later, it’s still hard that I had to let go of my dream of working at the State Department, and it’s also difficult watching my friends do the things we talked about all of us doing, like going to grad school, getting married, and having children,” she says. The lupus flare-ups are so intense and debilitating that she’s unable to work because she never knows when one will appear and how long it will linger. When it happens, she’s back to those first “bad flu” weeks of fatigue — often so intense she doesn’t have the energy even to speak — but unlike when all this started, she’s learned how to deal with them. Hester says these are the nonnegotiable, must-do self-care practices that have helped her cope with the condition.
1. See a Therapist
Seeing a therapist helps Hester manage the emotional roller coaster of living with a chronic illness, she says. At times, Hester says her doctors have also prescribed antidepressants, which have helped her manage feelings of anxiety and depression.
2. Stay Connected to Family and Friends
“If someone was diagnosed yesterday and asked me what to do, I’d say strengthen your circle of support,” she says. “It doesn’t have to be a big circle, just people you can count on. My friends have been there for me, they keep me grounded.”
3. Find Dr. Right
Another major part of self-care, Hester adds, is finding the right specialist. She appreciates her rheumatologist’s experience and insights, but it’s the doctor’s bedside manner that actually matters the most. “She’s not just treating my disease,” Hester says. “There’s a person under this diagnosis, and she sees that. Not every physician does, unfortunately. But my advice is to keep looking until you find one who wants to know how you’re doing and means it.”
4. Keep Active
Also, despite how tough it can be with fatigue, it’s important to keep moving, she says. Even if that means walking around the house between flare-ups, or doing some easy exercises whenever possible. Mikhael agrees that movement is medicine to some degree, especially with autoimmune diseases. Although it may seem counterintuitive to exercise when your body craves sleep, activity can help counteract that fatigue, he says.
5. Be Easy on Yourself
Finally, be kind to yourself. Pivot when needed. Let go of frustration over what you can’t do, Hester suggests, and focus on today. “I can be on top of the world on Monday, and by Tuesday, the world is on top of me,” she says. “That’s why it’s important to be gentle with yourself, and have the support you need in place to get through that.” RELATED: What Is Self-Care and Why Is It So Important for Health and Wellbeing?
