A number of Affordable Care Act provisions are helpful to people with lupus. These include banning insurance companies from denying coverage for pre-existing conditions; allowing young people up to age 26 to receive health insurance through a parent’s plan; and eliminating insurance coverage caps.
A Special Bond: Actor Ian Harding supports his mom through lupus advocacy
Ian and Mary Harding. Photo: Bradley E. Clift
By Kadesha Thomas Smith
Ian Harding was a freshman drama student at Carnegie Mellon University in Pittsburgh when a classmate noticed his purple wristband.
“Who do you know with lupus?” his classmate asked, sounding worried.
“My mom,” Ian responded nonchalantly, wondering why this girl seemed so concerned.
“My mother had it, too,” his classmate explained.
Ian noticed the past tense—had it. His classmate’s mom had recently passed away.
Even though Ian’s mother, Mary Harding, was diagnosed with lupus in 1994 when Ian was eight years old, he never realized until that conversation that lupus could be fatal.
That’s when he decided that wearing the wristband was not enough. He wanted to do more. His immediate success as an actor after finishing college in 2009 positioned him to do just that: Ian Harding stars as Ezra Fitz on the ABC Family television mystery series, Pretty Little Liars.
The show’s summer finale in 2013 drew 3.3 million viewers, according to The Hollywood Reporter. Ian has won a Teen Choice Award for the show every year since 2010. His Twitter handle, @IANMHARDING, has more than 1 million followers. And his fan base happens to be the demographic most at risk for developing lupus—young women.
“It’s one thing to have an older person saying, ‘Watch out, you might get this someday,’ ” Ian says. “Most young people will just say ‘yeah, yeah.’ But I’ve met 16-year-old girls who have lupus. I want young women with lupus to know you’re not weird. You’re not alone. There’s a whole community out there ready to support you.”
Looking back on lupus
Ian and his mom, Mary, at San Diego Zoo Safari Park. Photo courtesy of the Harding family
Mary Harding was diagnosed with lupus at age 40. In addition to having two young children, Ian and his sister, Sarah, she had just finished her graduate degree in nursing and taken a full-time job at the veteran’s hospital at Walter Reed Military Medical Center near the family’s Virginia home.
The symptoms started with random, sharp pains in one hand that would shoot to the other, and pain in one knee, then the other. Her family had no known history of lupus, so doctors tested for viruses and other illnesses before identifying the correct diagnosis.
The clinical journals Mary read at the time said the average life span for people with lupus was 10 years after diagnosis. “I remember thinking, ‘I can’t be sick now,’ ” says Mary, now 60. Her mother died from pancreatic cancer when she was just 11 years old. “I wanted to see my kids grow up, and I wanted to be an active participant in their lives.”
But she also didn’t want to hide her illness from her children. “Initially, Ian couldn’t pronounce it—he called it ‘roofus,’ ” Mary says.
Looking back, Ian doesn’t remember his mother’s illness as a significant barrier. “I can’t say I had a childhood with a sick parent,” he says. “My mom and I are similar. We don’t have time to be sick.”
Mary continued to work full time as a cardiology nurse at Walter Reed and take care of her household. Some days, that meant standing so long that her feet were swollen at the end of her shift. It meant grocery shopping, even though the fluorescent light made her exhausted and irritated her skin. And it meant doing housework despite swollen hands and joint pain.
“The kids were good about it,” she says. “If I needed to take a nap or just be horizontal, they were fine with it.”
In hindsight, Ian says he sees how lupus and the medications shaped what he thought was his mother’s personality. “I had no idea why she sometimes seemed so fidgety, constantly moving,” he says. “I thought it was just an adorable trait, not a side effect of the steroids.”
Sometimes Mary would get overwhelmed and frustrated when some random part came off the vacuum cleaner, Ian remembers. “Now, I understand why,” he says. “Everything becomes a task when you can barely close your hands. If I were a kid again and knew what this disease entailed, I would have asked her how I could help more.”
Mary says her main goal was to make sure her children didn’t let her condition become a barrier in their lives. Both Ian and Sarah were in scouts, church youth group, and the school choir. Then, in high school, Ian joined his school’s drama club.
“There were maybe one or two events where she stayed home sick,” Ian says. “She managed to have a lot of control over it. But I’m sure there were times when she was sitting through one of my horrific plays with her hands on fire, hating that half those kids couldn’t sing on key.”
“I didn’t have to learn about lupus”
After his third high school play, Ian told his mom he planned to pursue acting. He took his mom’s advice to study acting in college, so if he didn’t become an actor, he could teach others.
In November 2009, less than six months after graduating with a Bachelor of Fine Arts from Carnegie Mellon, Ian auditioned for a pilot of Pretty Little Liars in Los Angeles and got the part. “I got stupidly lucky,” Ian says. Because the success came so suddenly, Ian felt a sense of guilt and a desire to use his newfound fame for a larger purpose.
“We instilled in our kids that at some point you have to give back, and it should be something that matters to you,” Mary says.
“So often, celebrities get into causes that don’t feel authentic, some political crisis that they don’t really know about,” Ian says. “I know about lupus. I didn’t have to learn about it. I grew up with it in my life.”
Mary says she wasn’t surprised that Ian chose to work with the Lupus Foundation of America, but she didn’t expect him to get so involved: “I would have been proud if he’d just written a check.”
Raising money and awareness for lupus has been one of Ian’s main jobs when he’s off set. The Web address on his Twitter profile doesn’t link to Pretty Little Liars or a personal website. It links to the donation results of last year’s lupus walk in Los Angeles [ed: it has since been changed to lupus.org]. He’s participated in the Lupus Foundation of America’s national Walk to End Lupus Now® event for the last two years and attended a fundraising fashion show organized by supporters in California. Last year, he helped raffle his own autographed T-shirts. So far, he’s raised more than $20,000 for lupus research.
Mary has also heard how Ian’s celebrity is helping young women recognize lupus and get help. She recalls hearing about one fan whose friend had vague symptoms. The fan thought about Ian and told her friend to look into whether she had lupus. “It’s the awareness,” Mary says. “That’s the key.”
The next scene
“Pretty Little Liars” films for nine months of the year. Ian visits his mom at home in Virginia every other month; Mary has visited him in Los Angeles twice.
Like any mother-son bond, the dynamics of their relationship have changed. They have candid conversations about life—though she sometimes shushes him and tells him to “use his inside voice” in public before a teenager spots him.
He’s also no longer a child with only a vague notion of his mother’s illness. He’s more aware of how lupus affects people and the progress that’s been made since his mother was diagnosed 20 years ago.
“We’ve come so far in just two decades,” he says. “This may sound weird, but it just feels like it’s something that’s beatable if we stay on this path.”
Ian’s goal for 2014 is to raise another $20,000 in a single fundraiser. “My biggest worry is that some people might give up,” he says. “You can live with this disease. It’s a daily struggle. It’s terrible. But you can do it—just like my mom.”
Ian Harding learned a few things growing up with a mother who has lupus. He offers these tips for children of moms, or dads, who have this disease:
- Do your own dishes.
- “If my mom cooked, one of us would do the dishes. She taught us that she wasn’t going to pick up after us. We had legs and arms, too.”
- Ask how you can help. “Be as attentive as possible, and ask if you can help out with chores.”
- Don’t stress her out. “Nothing brings on a lupus flare more than stressing your mom out because you’re being a [jerk]. That really upsets me.”
- Remember, it’s not about you. “As a child, you want attention from your parents. But you have to understand that your mom needs attention, too. She’s not doing this on purpose. And in a couple years, you’re going to feel like a major ‘expletive’ for not being more understanding. It’s tough, but you have to get it together.”
- Live your life. “When the flares come, they’ll come. Don’t live in fear that something bad will happen. Enjoy the moments you have, and live life to the fullest.”
We each have the right to express ourselves. But when communication causes confusion, misunderstanding, and frustration, it’s not communication. In this article, psychologists Paul J. Donoghue, Ph.D., and Mary E. Siegel, Ph.D., examine how we speak, how we listen, and how we can be more effective at both.