Living with Autoimmune Disease

The causes of autoimmunity remain vague. Cures are elusive. But for many, the symptoms can be managed.

Illustration by Katherine Lam

In the fall of 2011, at the age of 51, my mother fell seriously ill. Over the span of several months, she lost 50 pounds, dropping from a size 16 to a size 10. She was plagued with extreme fatigue and aches in her joints, loss of appetite and tingling pain in her wrists. Some days, she told me, it felt like somebody was sitting on her chest. In the weeks leading up to Christmas, she spent entire days camped out in pain on a reclining chair, clutching a chocolate-colored stuffed moose, waiting to find out what was wrong with her.

This wasn’t the first time my mother had encountered medical issues. She’d suffered a brain hemorrhage as a teenager. In the 2000s, when she was in her 40s, she’d miraculously survived three pulmonary embolisms. When doctors had searched for blood clots in the veins in her legs—the source of most pulmonary embolisms—they found none. They sent her home with a prescription for blood thinners, which she injected into her abdomen daily.

But she didn’t feel cured. Her wrists began to ache, causing so much pain that she had to wear wrist guards to sleep at night. Then the aches traveled to her knees, making daily tasks like climbing stairs and grocery shopping uncomfortable. She suffered lower back pain that gradually increased. She dismissed her symptoms at first, as did her doctors, and tried to accept that this was all just part of menopause and aging.

By 2011, however, her symptoms were too severe to ignore. She finally sought relief at a hospital emergency room after experiencing several scary episodes of shortness of breath. This required a follow-up with her general practitioner, who referred her to a rheumatologist. The lymph nodes under her armpits were swollen and tender, so the doctors ordered a biopsy and several blood tests. They feared it could be lymphoma, a type of cancer involving the immune system.

On Christmas Eve, my mother finally got a phone call with a diagnosis. “We believe you have lupus,” her doctor said.

She laughed. “Isn’t that what they always think is wrong on House?”

We were relieved it wasn’t cancer. But at least lymphoma is a curable condition. An autoimmune disease is another story.

More than 100 conditions are categorized as autoimmune diseases, an umbrella term for conditions that cause autoimmunity, or immunity against the self. The affected patient’s immune system misidentifies healthy tissues or organs as being foreign, causing the body to produce antibodies that attack its own tissues.

Autoimmune diseases are chronic ailments and can affect almost any part of the body, including the heart, brain, nerves, muscles, skin, eyes, joints, lungs, kidneys, glands, digestive tract and blood vessels. Each disease carries its own set of symptoms, but inflammation is nearly always among them.

According to the American Autoimmune Related Diseases Association, an estimated 50 million Americans are living with an autoimmune disease—yet only a small percent of Americans can name at least one.

You might recognize some by name, such as lupus, rheumatoid arthritis, or multiple sclerosis. Perhaps you know someone who has been diagnosed with Hashimoto’s disease, psoriasis, scleroderma or Crohn’s disease. Others appear less frequently in pharmaceutical commercials and organized charity walks. Consider Addison’s disease, which affects the adrenal glands; Graves’ disease, which attacks the thyroid; Sjogren’s syndrome, which causes dry eyes and dry mouth; or Still’s disease, a systemic auto-inflammatory disease. Even less common is a condition called relapsing polychondritis, characterized by inflammation and deterioration of cartilage found in the ears, nose, trachea and joints.

Autoimmune diseases are notoriously difficult to diagnose, and there is no cure for them once identified. “The diversity of these conditions can make them difficult to distinguish from one another,” says Dr. Elliot Rosenstein, who helped launch the Institute for Rheumatic and Autoimmune Diseases at Atlantic Health System’s Overlook Medical Center—the only facility of its kind in the state of New Jersey—with fellow rheumatologist Dr. Neil Kramer in 2011. Both doctors specialize in the diagnosis and treatment of autoimmune inflammatory diseases.

To complicate matters, patients with the same autoimmune disease don’t always present with the same set of symptoms, and the symptoms they do have are frequently nonspecific—fatigue, low-grade fevers, weight loss, nausea and dizziness—which can be caused by a number of other conditions, including other autoimmune diseases.

“These diseases can have overlapping manifestations,” says Rosenstein. “To distinguish between a patient who has rheumatoid arthritis and a patient with lupus sometimes is very difficult.”

It’s still a bit of a mystery what, exactly, causes an autoimmune disease. Across the board, they are more common in women. Even this difference can vary. Rheumatoid arthritis is two to three times more commonly found in female patients. Lupus and Sjogren’s syndrome occur nine to ten times more frequently in women.

“There are lots of reasons, some of which have been identified, most of which we don’t really understand,” says Rosenstein. “It’s often blamed on estrogen, but that’s an incomplete explanation. There’s a genetic predisposition, but it’s not very strong.”

“The paradigm of all the autoimmune diseases is that you have a genetically predisposed person with a certain hormonal milieu who encounters some environmental factor, which then triggers autoimmunity,” explains Kramer. “What those environmental factors are is still being looked for in viruses, infections and the gut micro biome.”

Certain chemicals and lifestyle habits are known to increase risk for these conditions. Smoking is one of the greatest risk factors for rheumatoid arthritis. Workers exposed to silica are more predisposed to conditions such as scleroderma and lupus.

While there is no medical cure for autoimmune diseases, and some conditions can be fatal, they can be managed and symptoms treated—though not always easily.

“For some patients, it can be overwhelming,” says Kramer. “The logistics of seeing multiple doctors is very time-consuming and can create a lot of anxiety.”

On the other hand, for patients who are doing well, the only reminders of their illness are regular medications and routine doctors visits. It’s possible for them to “forget they have the condition,” says Rosenstein.

Illustration by Katherine Lam

Lifestyle changes may help alleviate some symptoms. Decreased stress, sufficient rest, regular exercise and the proper diet are all important, as is avoiding whatever triggers flare-ups, which is different for every person. Finding the most efficient drugs for each patient is part of the process, too.

“We have made amazing strides in treating some of these conditions in the last 20 years,” says Rosenstein. “For the longest time, the medicines that we used were medicines that we stole from other specialties. We didn’t necessarily understand how they worked. We just knew that they did. But now we’re working with tailor-made molecules that are designed specifically to treat the conditions we need them to treat.”

My mother is fortunate in that she is now healthy. After receiving her diagnosis, her team of doctors found the likely source of all those pulmonary embolisms and her lower back pain. The lupus had been attacking her kidneys, which her immune system mistook as invaders, and they were filled with blood clots. She underwent four chemotherapy infusions to wipe out her immune system, a way of tricking it out of attacking her organs. Her nephrologist referred to the process as “putting out a forest fire” in her kidneys.

Since then, her doctors have been able to manage her lupus symptoms with the right cocktail of medications. She takes an antimalaria drug that works to control outbreaks caused by lupus and organ-transplant rejection drugs to prevent the lupus from attacking her kidneys again. She’s been weaned off the high dosages of steroids she once took to reduce inflammation, which caused side effects like weight gain, insomnia and brain fog.

Not every person living with an autoimmune disease is as fortunate.

Three years ago, Adrian McCloskey, now 47, was diagnosed with Graves’ disease, which mainly affects the thyroid gland. Graves’ disease is her main medical issue, but she has a litany of other autoimmune conditions, including alopecia, rheumatoid arthritis and endometriosis. The medications she takes to manage her conditions—12 pills daily—occupy three rows of her medicine cabinet.

Before her autoimmune disease took over her life, McCloskey worked as a surgical and medical assistant. “I loved it, but then I got so sick that I just couldn’t do it anymore,” she says. “Plus, being sick with an autoimmune disease is a job.”

After she left her full-time job, McCloskey attempted a part-time position at Bed Bath & Beyond. She lasted two hours before physical symptoms set in. “I felt dizzy, nauseous, and had brain fog,” she says. “I never went back after my first day.”

Managing her medical appointments is a job in itself. Not a week goes by that McCloskey doesn’t have to see one or more of her many doctors—rheumatologist, endocrinologist, gastroenterologist, neurologist, pain-management specialist, psychologist, plus a physical therapist and chiropractor —and those are in addition to routine annual health exams and dental check ups.

The physical limitations autoimmune diseases can impose are another challenge. McCloskey uses the analogy of a cell phone battery to explain how the experience can feel. “When you charge your cell phone at night, you expect it to be at 100 percent in the morning. When you have an autoimmune disease, your battery may only charge up to 40 percent,” she says. “So now you’re already starting your day at 40 percent. Your morning routine might take 15 or 20 percent of that battery power. Now all you’ve got is a small amount left to do whatever you have to do with the rest of your day.”

For McCloskey, this meant a change to her daily routine and a loss of activities she once enjoyed. “I used to be spontaneous and liked to travel. Now I have to find things that are close to home,” she says. “I stay within a 5 to 10 mile radius most of the time.” She has her groceries delivered to her front door, and something as simple as doing the laundry now requires her husband’s assistance. When she does leave the house, she makes sure not to forget her cane, adorned with a hand-carved raven on its handle.

But one of the most tiring challenges for McCloskey is having to explain to—and often convince—friends and family that she’s not a hypochondriac. “It’s hard for people to understand what you’re going through,” she says. “They often just say to me, ‘Well you don’t look sick. Just take some aspirin.’ They don’t get it. I live with an unpredictable disease.”

We sat together in her Middlesex home on the morning of the solar eclipse in late August. It was a good day, she told me, but her symptoms—which regularly include nausea, chronic fatigue, irritable bowel syndrome and more—are often erratic. “Four hours from now, I might go see the eclipse, or I might be napping,” she said. “The biggest challenge is the chronic fatigue. I’m just so tired, like underwater-weights, running-in-sand, somebody-on-my-back-tired.”

I’d met McCloskey earlier that month at an autoimmune disease support group in Somerville. More than half a dozen people living with an autoimmune disease attended, including Jennie, who has lupus; Robin, who lives with rheumatoid arthritis and lupus; Patrick, who has Crohn’s disease, Sjogren’s syndrome and autoimmune liver disease; and a woman with granulomatosis with polyangitis, also called Wegener’s granulomatosis, a rare condition that can attack any small vessel including the ears, sinuses, lungs and kidneys.

Green Brook resident Joanne Price, 53, started the Autoimmune Disease Support Group in 2009 after being diagnosed with Still’s disease. Like many others living with an autoimmune condition, her road to a diagnosis was long. When she was 33, Price started experiencing a variety of symptoms—insomnia, digestive issues, night sweats, shakiness and unexplained inflammation. This went on for more than nine years before her disease was determined. She still remembers the day in 2007 when she received her diagnosis. “I went home and cried. Not sad, but relieved sobbing. Relieved we knew what it was. Relieved that my doctor always believed me,” she says.

Soon after the diagnosis, Price went looking for a local support group dedicated to autoimmune disease. Frustrated that she couldn’t find any, she started her own.

“All day long, people are trying to tell us how to fix ourselves,” says Price, who wanted to create an environment where people could speak openly and honestly about the challenges, grief and triumphs they face on their journey with autoimmune disease—a place where members didn’t have to hear, “but you don’t look sick.”

The group now meets on the second Saturday of each month in a conference room at Robert Wood Johnson University Hospital’s Somerset campus in Somerville. On the day I attended, Price opened the group discussion with an exercise. Participants were instructed to choose a crayon whose color resonated with them that day. They then shared updates about their emotional and physical progress.

“These illnesses can isolate, and isolation can be deadly,” says Price. The group offers a level of support and understanding members might not find at home. “Even the people who truly and dearly love you will be at a loss as to how to support you in some feelings and situations. Just having others at the table because they have an autoimmune disease, too, helps one feel less alone.”

For people with an autoimmune disease, life can be an arduous, ongoing journey. They ride the waves of good days and bad days, with the possibility of an unpredictable flare up—the sudden and severe onset of symptoms—always looming.

“It’s like the sword of Damocles hanging over your head,” says Rosenstein. “You never know when it’s going to fall.”


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Comments (3)

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  1. Esra Nortje

    Thank you for all the info …now I know that Iam not crazy and feel still on the map of an ouback road somewhere

  2. Stephanie Carmel

    Thanks for writing about auto-immune disease. It needs to be communicated openly to be better understood.

  3. Addie Firebird

    It was an absolute treat to sit with Shelby and be able to relay this information without getting that ‘sideways glance’. People don’t understand Auto Immune because doctors often times don’t either. I remember in medical school, we spent about 20 minutes on the topic. Please support your loved ones!