By Mary Carpenter
AT AGE 25, the writer Flannery O’Connor became ill with lupus, forcing her to move from an independent literary life in New York back home to the middle of Georgia and back in with her mother. Lupus (systemic lupus erythematosus) and multiple sclerosis (MS) are two autoimmune diseases with a lot in common that have afflicted famous young female artists.
Known as “relapsing-remitting disorders,” the course of each involves flares of symptoms followed by remissions. Especially during remissions, lupus and MS fall into the relatively recent category of “invisible” illnesses or disabilities—which can include everything from ADHD to cancer. As posted on the Invisible Disabilities website: “People are parking in an accessible parking space with a placard, but they look fine. I wonder if that driver has an invisible disability.”
“The category of invisible illness, which means exactly what it sounds like—an illness or disability not immediately apparent—is growing sharply in America,” writes Mireille Silcoff in a New York Times essay on the invisible effects of a head injury, inspired by the case of retired optometrist Terry Sanderson. Suing actress Gwyneth Paltrow for damages following “a ski collision he said was her fault,” Sanderson acknowledged that he had continued to travel and do Zumba, and he lost his case.
“Through the wonders of medicine we’ve become great at turning life-or-death illnesses, like diabetes, heart conditions or certain forms of cancer, into chronic conditions that can often be lived with,” according to Silcoff. “At the same time, diagnoses of hidden diseases like Crohn’s or fibromyalgia are becoming increasingly common—as is long Covid, which on its own might have affected as many as 23 million Americans.”
Both lupus and MS occur more commonly in young women, from the late teens to early 40s; and symptoms for both can include muscle and joint pain, fatigue and neurological deficits. Most sufferers of both are able to lead normal lives between flares, and have typical lifespans.
And both conditions have “clinical diagnoses” in the absence of a lab test or imaging that provides confirmation. The difficulty of a definitive diagnosis is a burden for many sufferers of the more than 80 autoimmune diseases—which can also have confounding symptoms. Muscle aches and fatigue, for example, can appear similar in more than one autoimmune disease as well as in many other illnesses.
The parts of the body affected by different autoimmune diseases usually determines the symptoms—from alopecia areata that causes hair loss, to type I diabetes that destroys the pancreas. And the causes of most autoimmune diseases include genetic components as well as triggers that can include viruses and environmental factors. According to medlineplus, “if you have one autoimmune disease, you are more likely to get another.”
Most challenging for many sufferers is the unpredictability of relapses, which “can make you angry—and for good reason [that they] don’t follow the rules and they don’t play fair,” writes Erica Jacques on verywellhealth. “It can be frustrating, especially, when your symptoms recur when you’re doing everything right, or remit when you’re doing everything wrong . . . with MS, anger can be caused by changes in the brain as well [and] autoimmune diseases can produce in your mind a deep feeling of insecurity.”
Until recently, corticosteroids offered the primary relief for sufferers of these conditions by tamping down the immune system—but over time such dull weapons also damage bones and organs. Newer, better-targeted biologics—biologically engineered proteins—can get the immune system working normally “by turning certain cells and proteins of the system up or down,” according to verywellhealth.
Because MS affects the nervous system and brain, early signs can include double vision, numbness and tingling and problems with balance. Cellist Jacqueline Du Pre, the subject of the film Hilary and Jackie, lost sensation in her fingers that forced her to stop performing at age 28. She began behaving so erratically that her sister Hilary said later, “the Jackie I knew and loved died years before her actual death in 1987.”
With lupus, an out-of-whack immune system causes inflammation and damage to healthy connective tissue throughout the body —in the skin, joints, kidney, heart, and lungs—with the nervous system and brain less common targets. Early symptoms of lupus are usually migraine headaches, rashes and joint pain.
When Flannery O’Connor’s lupus first appeared in 1950, corticosteroids were new, and early difficulties controlling the dosages led to weakness in her bones. Her health deteriorated until she died from kidney failure at age 39. In the end, however, she was grateful to spend her last years in Georgia, where her mother Regina brought daily reports from the town gossip and, as Flannery said, the sounds of the South, mostly the southern way of speaking “build up a life of their own in your senses.”
Many people struggle with invisible difficulties, including mental health issues like severe anxiety and panic attacks. A “disability,” according to medicalnewstoday, “makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).” As Silcoff noted in the New York Times, “A man can have a life forever altered by a concussion. And he can also Zumba.”
Peripheral neuropathy, or diminished sensation, in my legs and feet can cause me to lurch and veer when I walk, but it’s not a disability for me. And the symptoms are not invisible but rather misleading: As MS sufferers notoriously report, wobbly walking looks like drunkenness. A few incidents with people leaning in close to check for alcohol on my breath helped convince me to give up drinking, but these also gave me greater awareness of the possibility of invisible disabilities in almost everyone.
—Mary Carpenter regularly reports on topical subjects in health and medicine.