Life, one step at a time
Surviving and thriving with a chronic disease
Christine Jones-Wollerton will never take for granted the simple pleasures of parenthood, things like taking her children to the park, driving her oldest daughter to Girl Scout meetings or swimming at the community pool.
"I try to do as much as I can," said the New Jersey mother of three, whose psoriatic arthritis and severe psoriasis prevent her from participating in many of the activities most parents consider routine. "It's hard for the children to understand."
Jones-Wollerton was 30 years old when the disease appeared in 2002. Her first child, Aisling, was six months old at the time. After just a year, the joint pain of psoriatic arthritis became so severe that she couldn't lift her daughter. Since her diagnosis, the disease has triggered a host of secondary problems, from nerve damage in her legs to liver disease as a side effect of medications. Caring for her head-to-toe psoriasis has become a full-time job, an endless cycle of biologic injections, messy topical treatments and a constant effort to rid her home of the skin flakes that follow her everywhere.
"The ramifications go way beyond discomfort," she said. "The psoriasis becomes your life."
Jones-Wollerton is just one of millions of Americans dealing with the litany of challenges that arise from chronic disease. As recently as 2005, nearly half of American adults had at least one chronic illness, according to the Centers for Disease Control and Prevention. That equates to 133 million people (including 7.5 million with psoriasis) who are facing the diverse obstacles that chronic disease can present.
As challenging as chronic illness can be for both individuals and families, however, a variety of coping strategies — and advice from those who have been there — may help ease the burden.
"It's very clear that some people cope with chronic illness better than others," said Dr. Rosalind Dorlen, a New Jersey-based psychologist who specializes in issues related to chronic disease. "I believe it's a skill that you can acquire."
Finding acceptance and opportunity
Fred Finkelstein doesn't shrink from showing his skin during a flare, or shaking a stranger's hands with his own, which have been disfigured by psoriatic arthritis.
"This is who I am, and I'm not going to apologize for it," said Finkelstein, a San Francisco-based filmmaker and teacher who was diagnosed with psoriasis in 1976, at age 29. "People respect that."
But that courage hasn't come easily to Finkelstein; it's the result of years of effort.
"I have to constantly work at accepting myself," Finkelstein said. "This disease pulls you in, and the tendency is to feel diminished."
A chronic disease diagnosis often results in feelings of pain, anxiety, fear and sadness, Dorlen said. The challenge for patients is to achieve "the new normal."
"They can't go back to the old normal," she said. "They mourn the self that they were before."
Part of successful coping — or adapting to that new normal — lies in developing and enhancing resilience, or the ability to bounce back in the face of adversity, Dorlen said. One way people can do so is by working to change their perception of their illness; instead of viewing it as an insurmountable obstacle, try to frame the diagnosis as an opportunity.
Opportunity can take many forms, from an inward journey of self-discovery to — as in Finkelstein's case — the chance to benefit others. Several years ago, he started The Sparklestone Foundation (www.sparklestone.org), a nonprofit that channels his passion for filmmaking into a mission to shed light on chronic illness and how it affects people. The foundation's first two films, explore the day-to-day realities of living with psoriasis and psoriatic arthritis, and have given Finkelstein a measure of empowerment by educating others about his condition.
"I feel like I can stand up and be counted," he said. "While psoriasis is a big part of my life, there are other parts of me, and other parts of all of us."
It's a typical day for Jones-Wollerton's husband, Chris. He drives an hour to work, where he logs an eight-hour shift at a physically demanding factory job. He then drives an hour home, checks on his often-bedridden wife, makes dinner, changes the sheets, then puts three kids ages 10 and under to bed.
It's a heavy load, but one he bears gladly. However, caring for a loved one with a chronic disease can easily become overwhelming, which is why sharing day-to-day responsibilities with others is crucial to avoiding burnout.
"We've had to ask for a lot of help and not be ashamed to ask for that help," Jones- Wollerton said.
The couple relies most heavily on her father, who cares for their youngest children during the day and drives his daughter to doctors' appointments.
"Without him, I can honestly say I have no idea what we'd do," Chris said.
But when extended family isn't able to help with the logistical challenges of caring for someone who is chronically ill, it may be necessary to reach out to friends or the broader community for assistance.
"Most people are looking for an opportunity to help, they just are not sure what kind of help you need," said Sheila Warnock, founder and president of ShareTheCaregiving, Inc. (sharethecare.org), a nonprofit organization that instructs people on how to organize a group to care for someone who is seriously ill.
Warnock's book, "Share the Care," which she co-authored with her late friend, Cappy Capossela, offers a blueprint for gathering friends, family and acquaintances into a wellstructured group that distributes tasks from transportation to meal preparation.
"There's always something somebody can do," Warnock said. "That's when people shine, when they have an opportunity to give something of value back to someone."
Even without an organized group of caregivers, friends can be an important source of relief, if you know how to ask.
"If you're asking for help, be clear that you're asking for help and be specific about what you need," Jones-Wollerton said.
Churches, nonprofit groups and local boards of health are other potential sources of support. All can help connect chronically ill people and their families with additional resources, such as funds to help those in need, local teenagers seeking community service hours who can offer free childcare, or visiting nurses who can provide personal care.
"The more we're able to help each other, the better off we're going to be," Warnock said.
Reaching out to others is important from more than just a practical standpoint, however. It's also another key to developing resiliency in the face of chronic illness, said Dorlen. Even connecting with others online through online communities such as TalkPsoriasis.org can be helpful.
"It takes people out of isolation, which is the enemy of good mental health," Dorlen said.
Optimism is one of the most important keys to coping with chronic disease, but it may also be one of the most difficult to maintain.
"Maintaining a hopeful attitude, as opposed to a bleak, hopeless attitude, is really going to be helpful," Dorlen said. "It may not cure the illness, but it'll make the road a little less bumpy."
Despite her struggles, Jones-Wollerton is able to look past her disease to the good in her life: her three healthy children, a loving husband and the achievement of her longtime goal of becoming a board-certified lactation consultant.
"This is a great time in my life," she said.
Both she and Finkelstein also stress the importance of maintaining a sense of humor.
"It helps me find the beauty of life, being able to laugh," Finkelstein said. "The glass has to be half full."
Optimism in the face of adversity may come more naturally to some than to others. But Dorlen says people can boost their outlook with simple strategies, such as keeping a journal to record three things they're grateful for each day and visualizing themselves or their loved one in a better state.
Jones-Wollerton's husband Chris has mastered the latter: Perhaps his greatest coping mechanism is his ability to look toward a day when his wife's condition will improve, when more of those simple pleasures of parenthood will be hers.
"It's only temporary, that's the way I have to look at it," he said. "In my mind, it will get better."