Understanding all aspects of lupus
The Lupus Foundation of America describes it best: “Lupus is an unpredictable and misunderstood autoimmune disease. It is difficult to diagnose, hard to live with, and a challenge to treat. Lupus has a range of symptoms and strikes without warning.”
Why people, mostly women, get lupus is unknown. What is known is that it most often affects women during their reproductive years — ages 15 to 44 — when estrogen levels are higher. It’s estimated that 1.5 million Americans (men and children included) have been diagnosed. And sadly, many displaying symptoms haven’t been identified with lupus and won’t be.
The Cleveland Clinic says that lupus is more prominent in certain ethnicities. “African-American, Hispanic, Asian, and Native American women are all more likely to develop the condition than Caucasian women. Your risk of having lupus is also increased if you have a family member with lupus or another autoimmune disease.”
Lupus impacts many different parts of the body. It causes aches and pains, as well as serious complications to major organs. Extreme fatigue and skin issues are common.
“Some people with lupus have a red rash over their cheeks and the bridge of their nose. Because the location of this rash is the same as the common markings of a wolf, the name ‘lupus’ (wolf in Latin) was given to this disease. Other skin problems that may happen include large red, circular rashes (plaques), which may scar (called discoid lupus). Skin rashes are usually made worse by sunlight. Hair loss and mouth sores are also common,” Cleveland says.
Painful arthritic joints, with or without swelling, are also common. Up to half of lupus sufferers may experience kidney problems particularly when other symptoms are present. Kidney issues can be life threatening.
“Heart and lung involvement is often caused by inflammation of the covering of the heart (pericardium) and lungs (Pleura),” Cleveland explains. They also add that although brain problems are rare, when present they may cause confusion, depression, seizures and, even more rarely, strokes.
Mayo Clinic says, “Diagnosing lupus is difficult because signs and symptoms vary considerably from person to person. Signs and symptoms of lupus may change over time and overlap with those of many other disorders.”
A person on the website Lupuscorner.com stated, “I was 18 when I was diagnosed with lupus. It was a life-altering moment for me. Within a matter of days, the person that I used to be was gone and what was left behind was a broken, tired mess who didn’t know where to go on from there.”
This person mentioned how no one could understand what they were going through and that it took a lot of time for them to adjust to their disease and to “acknowledge that this is always going to be my life now, and the cranky, sore joints, nausea, fatigue, varying levels of esteem were going to be my constant buddies.”
On this same website there’s an article titled “What Not to Say to Someone with Lupus.” If you know someone with lupus, it’s a very informative read. It affirms that it’s hard to have empathy if you don’t understand how someone with a chronic illness feels, particularly in the case of lupus since the symptoms are mostly invisible.
“Nearly 50% of people with lupus experience some sort of brain or nervous system-related symptom related to their lupus. It’s a challenge that makes everything a little more difficult, and depression and loneliness are also something that many people with lupus struggle with,” Lupuscorner.com says.
Some of that loneliness happens because a person with lupus doesn’t always have the energy to participate in activities outside those of normal daily living.
“What many healthy people don’t understand is that the little things take effort. Standing up, reaching out, picking out clothes, getting dressed — all of these take more energy and willpower for people with lupus. Simple tasks can be draining and can even draw against the energy available for the next day,” Lupuscorner.com says.
Most lupus symptoms can be controlled with medications, but the journey to finding out what will work for each individual can be long and arduous. For those of us who are friends and family, a lot of patience on our end goes a long way.
Kathy Hubbard is a member of Bonner General Health Foundation Advisory Council. She can be reached at kathyleehubbard@yahoo.com.
