Rethinking Chronic Illness

Growing up in Katonah in the ’00s, Allie Cashel and Erica Lupinacci were classic girl pals. “We were both into theater so we acted in shows together; we had sleepovers at each other’s houses,” says Cashel. “If you can imagine suburban best friends, we were those girls.” When they got their driver’s licenses, Cashel and Lupinacci would just drive around, talking about everything there was to talk about—boys, school, gossip, friends. But there was one thing they didn’t discuss, ever, and it was probably the biggest thing they were going through in their young lives. They were both chronically ill. Cashel had been diagnosed and treated for Lyme disease at seven years old, but her symptoms never went away; instead, they got worse as she passed through adolescence and young adulthood. After two years of mysterious ailments and misdiagnoses, Lupinacci found out she had lupus when she was 17. Of course, they each knew the other was sick. But talking about it was not an option. “I was terrified to bring it into my social life, so I never brought it up, not one time,” says Cashel. “There just wasn’t space for [being sick] in the identity that I was trying to craft for myself at that time in my life.”

A few years later, Cashel dropped the reticence and started writing Suffering the Silence: Chronic Lyme Disease in an Age of Denial (North Atlantic Books, 2015), which grew out of her senior project as an undergrad at Bard College. The book tells the story of Cashel and others who are dealing with a medical community that refuses to recognize chronic Lyme disease; patients with persistent symptoms are often dismissed out of hand (one doctor told Cashel that it was physically impossible that she had Lyme, and that she was actually having a mental breakdown). While the book has received positive attention for exposing the politics of Lyme, it also came with a bonus: It inspired Lupinacci and Cashel to open up to each other about their illnesses. When they finally did, it was a relief—and it was also an epiphany to find so many parallels in their experiences. “The politics surrounding Lyme are really intense,” says Lupinacci, “but the emotional aspects [of our illnesses] are very similar—feeling alone or like no one understands, being embarrassed about what you can’t do, having to cancel plans, and just the unpredictability of life with a chronic illness.”

As the two women recognized how much sharing their experiences helped in their own lives, they decided to create that kind of connection for other people. In 2014 they launched a “Suffering the Silence” web community where people could share their chronic illness stories in a safe, supportive setting. In 2015 they added a visual element: self-portraits. People are invited to write the name of their illness on their arm and take a photo while covering their mouth, symbolizing how we are often “silenced” by illness. Via Twitter and Instagram with a #sufferingthesilence hashtag, the powerful portraits have spread like virtual wildfire. “I think that when people know there’s a community supporting them, a space where they’re not going to be judged and where people want to hear what they have to say,” says Lupinacci, “then they really do want to talk about it.”

(Sick) Elephant in the Room

If everybody spoke at once about their chronic ailments, our country would be a noisy place: According to the Centers for Disease Control and Prevention (CDC), about half of US adults, 117 million people, had one or more chronic diseases in 2012. Meanwhile, 86 percent of all health-care spending in 2010 was for people with chronic illnesses; that’s 16 percent of our GDP. Those numbers call into question the effectiveness of our current health-care system—which is really designed for acute illnesses rather than chronic ones—to handle this growing crisis, especially when you consider that the incidence of diseases like Alzheimer’s is expected to triple over the next two to three decades.

It’s statistics like these that swirl through the brain of Richard Horowitz, MD, the Hyde Park-based Lyme specialist and author of the book Why Can’t I Get Better: Solving the Mystery of Lyme and Chronic Disease (St. Martin’s Press, 2013). “We need to be creating an entirely new model for chronic diseases,” says Horowitz, who is working on projects with collaborators in the US and abroad to find ways to shift the paradigm for how we treat persistent health scourges. Unlike some doctors who say it’s all in your head, Horowitz is certain that chronic Lyme exists—so certain that he has given it a new name, Lyme-MSIDS (Multiple Systemic Infectious Disease Syndrome). And since Lyme tends to mimic other disease pathways, he considers it to be a useful lens through which to view all manner of chronic diseases and their treatment. The message that Horowitz presents is that it’s not just one factor that causes disease but a multitude of factors—and we have to consider them all if we’re going to make any progress in the medical world.

“Until we look at all the multiple etiologies which are causing chronic disease, medicine is going to be at a standstill,” he says. “We’re going to just keep throwing money at chronic disease epidemics and their end-stage manifestations, but we’re not getting to the source of the problem.” Horowitz identifies 16 factors that make people ill, in what he calls the 16-point MSIDS model. Toward the top of this list are infections and environmental toxins—two elements that are “probably the biggest part of what’s making people sick,” he says. For the most part, the medical community has ignored their effects, but recent studies at Harvard and the University of California, Davis, have looked at environmental factors such as pesticides that increase the risk of autism. “We’re finding a lot of new information that these infections and toxins are driving the inflammatory response,” he says, adding, “Inflammation is the number one common denominator in all chronic disease.”

Horowitz is coming out with an app to help people work with his 16-point model; he also has a vision for Chronic Disease Centers of Excellence—a new kind of clinic that will treat people using his multifactorial paradigm that looks at everything from bacteria in the gut to nutritional deficiencies and hormone imbalances. On the prevention and treatment side, he finds promise in epigenetics—a growing field of science about how we can change our genetic programming when it comes to chronic illness. “Nutritional supplements like curcumin [an anti-inflammatory], resveratrol [an antioxidant found in red wine], zinc—all of these things have been published in the medical literature as affecting the way our DNA acts in the body.” Horowitz also recommends meditation, exercise, and nine hours of sleep a night, noting, “There are things we can do to change our genetic destiny.”

Writing Your Own Story

When you’re living with chronic illness on a daily basis, self-care of the kind Horowitz describes is essential. For Kelly Stack—a North Carolina-based health coach who specializes in helping people with chronic illness, and who was herself diagnosed with multiple sclerosis at 24—it starts with your mindset. “It’s so easy for people to get totally identified with their illness and to put themselves in a box,” she says. “For a lot of people, their life is about their illness.” They might fixate on doctors’ protocols or medical statistics, getting pulled along for the ride in a way that creates a lot of stress. But it doesn’t have to be that way. Stack works with people to help them expand their experience and to reduce the feeling of isolation that chronic illness can bring. “It’s so liberating to realize that even if an illness is progressing, you can still do a lot to have a really full and amazing life. We don’t have to let circumstances dictate how we’re experiencing life. It’s important to stay open to possibilities.”

In her coaching sessions (which often happen remotely over Skype), Stack tailors her approach to the specific needs of each client, drawing from her training in holistic health, integrative nutrition, positive psychology, and mind-body modalities like meditation and mindfulness. “If [a client is] feeling something really strongly, I might ask, ‘Are you aware of that feeling that you’re having? What does that awareness feel like?’ That can lead people into a realization of the awareness that’s underlying everything and that’s unchanging, totally full and perfect, and that’s never been touched by illness, trauma, or any other circumstances. No matter what’s going on, pain or discomfort, there’s always this underlying consciousness.” Through exercises like this, says Stack, people can begin to disidentify with their illness and recognize that they are so much more than their diagnosis; they begin to find more peace. She also works with people to engage more with life, to seek out moments of pleasure, and to avoid the chronic stress that often comes with chronic illness.

“It’s easy for those of us who are on this path of exploring healing to get superconsumed with that. What’s the perfect diet? It’s constantly looking for the next thing that can heal us.” Of course, we can pursue healthy practices, but we need to do it with a sense of balance, says Stack—and we need to recognize that some things are beyond our control. “Explore and do what you can, but do it from a nourishing, wholesome place of acceptance and self-love.” It’s insights like these that Stack will expand upon in her forthcoming book, Flourishing with Chronic Illness, which draws from the ways she’s helped clients (and herself) to create a deep and satisfying experience of life, even through major challenges.

In Good Company

Having a chronic illness can be very isolating, says Stack, but with a little reframing it can also be a source of profound connection. Cashel and Lupinacci agree. “There’s real power when you bring people together with different diagnoses,” says Cashel about their “Suffering the Silence” web community and portrait project. “We want to create dialogue and raise awareness as a larger community rather than a fragmented one.”

They also want to help reveal what are often not just silent illnesses, but also invisible ones. “When you have symptoms like fatigue or joint pain, people can easily brush them off,” says Lupinacci. “Sometimes you look physically fine, and that makes it hard for them to picture you as ill or incapable of doing things. That lack of disability in your appearance can affect people’s ability to understand what you’re going through.” After breaking her own silence, Lupinacci feels that she has become a better advocate for herself, identifying what kind of support she needs from doctors, family, and friends. For Cashel, coming out about Lyme helped her come to terms with what she has gone through and claim it as part of her identity—as well as part of a larger collective of people. Her conclusion? “We’re in this together.”

RESOURCES

Allie Cashel/Erica Lupinacci Sufferingthesilence.com

Richard Horowitz, MD Cangetbetter.com

Kelly Stack Kellystack.com

This article appears in January 2016.