Systemic lupus erythematosus (SLE) turns the body on itself, causing the immune system to attack healthy tissues and causing a bewildering range of symptoms that often defy treatments. It can sometimes take years for a diagnosis to be made, as symptoms mysteriously come and go, and traits of the disease change. Receiving a definite diagnosis can often provide some relief, because now all symptoms can be treated as part of a whole.
“Ever since my diagnosis, I have been fighting what seems like a never-ending battle of learning to listen to the signs of needing rest,” says Corey Townsend, a 28-year-old who was diagnosed with the autoimmune condition SLE about five years ago. "The biggest struggle with lupus has been learning to listen to my body.”
Rachel Chrzan is a college student who received her diagnosis in November after experiencing a variety of odd symptoms for several months. It was lupus’s characteristic fatigue that hit her early on.
“I was always a morning person, as well as someone 100 percent active and on-the-go,” says Chrzan. “Once September hit, I was basically falling asleep in class or sleeping in my spare time.”
Chrzan became an advocate of the “spoon theory” to cope with her fatigue. The idea behind the spoon theory is that you only have so many spoons, or units of energy, a day. It originates from blogger and lupus patient advocate Christine Miserandino. Every activity, even simple ones like getting out of bed, uses up one of your limited supply of spoons. When all your energy is gone, so are all of your spoons.
“I never thought I would be comparing my daily life events to spoons,” says Chrzan. “But I never believed lupus would be a part of my life. I am learning to live with it, and the spoons are helping me.”
Managing Common Symptoms
Everyone’s lupus is a little different — that’s one of the things that make the disease so hard to diagnose and treat. You might experience symptoms that other people with lupus never have. You also could experience symptoms once, but never again. For that reason, it’s hard to say what the most common lupus symptoms are, but in general they involve the fatigue Chrzan describes, pain and weakness in the joints, headaches, and a facial rash.
Joint Pain and Weakness
One of lupus’s most debilitating effects is pain and weakness in the joints. These are similar to the body aches you often feel when you have the flu. However, the joint pain and weakness associated with lupus is often a recurring symptom. According to the Lupus Foundation of America, more than 90 percent of people diagnosed with lupus will eventually have joint pain.
There are many pain medicines for people with lupus. They range from over-the-counter treatments like ibuprofen, which reduces inflammation, to prescription pain relievers. Says Chrzan, “I was originally given hydrocodone prior to the diagnosis. Once the diagnosis was discovered, I was also given meloxicam [an anti-inflammatory]. But neither worked.”
Currently, Chrzan is using no treatments at all. An avid fitness buff, she has continued to push herself to exercise and finds this relieves some of her discomfort. “Although it may hurt to exercise, exercising for a small amount of time relieves some of the pain. Physical pain is also mental pain — you need to think yourself out of it sometimes.”
“I believe the headaches are one of the worst parts,” says Chrzan. “I still try to function as I used to, but it is difficult.” Chrzan has noticed that light triggers her headaches, and unhealthy eating triggers headaches, nausea, and fatigue. She has changed her diet to manage many lupus symptoms.
“I began to look into what helps other people with lupus, but also tracked what food affected me and how.” Chrzan says. The Johns Hopkins Lupus Center points out that while there’s no such thing as an ideal lupus diet, avoiding garlic and alfalfa sprouts, is critical. These foods consistently trigger lupus symptoms. People with lupus should also concentrate on eating lean proteins to reduce the chance of heart attack, which is higher for those with the condition.
Says Chrzan, “So far, I know I can't have red meat, dairy, sugar, and greasy foods. I have replaced the milk with soymilk and almond milk.” Chrzan mainly eats grilled chicken and eggs for protein. Currently, she doesn’t have much of an appetite, but she knows that eating regularly will help her stay healthy.
Lupus’s characteristic facial rash spreads over the bridge of the nose and onto the cheeks, similar to a sunburn. The name lupus, which is derived from the Latin word for “wolf,” comes from early diagnosticians who thought this rash looked like wolf bites.
More recently, it’s been called the “butterfly rash” after its two-winged shape. Your face may feel hot and feverish on the rash site, even though your temperature is normal.
Lupus is generally considered a disease with few symptoms obvious to observers, but the rash is an exception. Many people with lupus feel self-conscious about their rash. Says Townsend, “Existing in a society that is heavily based on looks, dealing with lupus can weigh a heavy toll on trying to maintain and ‘keep up with the Joneses.’ ”
Chrzan used to try to hide her rash with makeup, but she has learned to embrace it. “I look at the butterfly as a sign of strength and courage.” She also looks for inspiration from the animal that lupus was named after. “Lupus means wolf, which has always been my favorite animal due to its instincts, pride, and strength… . The representations of the disease have always had a meaning in my life. I just didn't fully understand why until I was diagnosed with lupus.”
Finding the Strength
Everyone with lupus will have a different and unique emotional response to the condition. Few people would claim to be happy about their disease, but many people with lupus have found that their diagnosis revealed an internal source of power they didn’t know they had. In spite of her symptoms, Chrzan intends to follow through with her plan to take a rock climbing class this semester and coach softball, and she is thinking about a future as a motivational speaker. As Townsend puts it, “If I wasn't strong enough to handle these symptoms, I wouldn't have been given them. My having them is a constant reminder of my strength and resilience."