You could say Christine Jones-Wollerton of Toms River, New Jersey, is a role model for staying positive while struggling with severe psoriatic arthritis and psoriasis. She sounds upbeat and full of energy when she tells her story, but even she admits that she sometimes feels devastated.
“It can be a very depressing and debilitating disease,” says the board-certified lactation consultant and mother of three.
“For me, my depression comes from the fact that I have had this for so long, and it has been very difficult to get it under control and keep it manageable,” she says.
When it comes to pain, there are two ways to look at it, says Renee Garfinkel, PhD, a psychologist in Washington, DC, and a columnist for The Washington Times, who has not treated Jones-Wollerton.
There’s objective pain, when you have tissue damage. It’s something you can look at in physical terms. And then there’s the suffering caused by the pain, such as anxiety and feeling overwhelmed, according to Garfinkel.
Getting rid of the pain would be the ideal solution. When you can’t, there are techniques that can make you feel calmer and happier despite your chronic condition.
A Double Diagnosis
Jones-Wollerton’s symptoms came on six months after the birth of her first child, in 2002. She suddenly became flushed, and the redness spread to every part of her body. The next morning, she woke up to see sores on her skin. She was eventually diagnosed with psoriasis and, a year later, with psoriatic arthritis.
Since then, she has developed painful psoriasis scales from head to toe. About a year ago, she chose to shave her head because the psoriasis on her scalp was so severe that it became difficult to treat with hair on her head.
Over the years, she has tried almost every treatment available, including topical medications, prescription drugs, biologics, and UVB phototherapy treatment. She has been hospitalized and travels out of state to see doctors, and yet her psoriatic arthritis remains difficult to keep under control.
Before her psoriasis, Jones-Wollerton felt comfortable with her body and even did some pregnancy modeling. But that has changed.
“It has been devastating,” she says. “It changes how I feel about myself as a woman. I have had my entire face covered in flakes where it was difficult to open my eyelids.”
When she first received her diagnosis, her doctor told her to wear flannel shirts to hide her skin. It was summertime. “I thought, ‘I’m 29, I’m a new mom, I can’t do that,’” Jones-Wollerton says.
One day, her daughter wanted to go swimming, and they went to a community pool. When they arrived, she recalls, the lifeguard called her over and asked if she had a disease. She explained that she had a skin condition that wasn't contagious. But she was told that the other parents felt uncomfortable and wanted her to leave.
“I picked up my daughter and ran back to my apartment in tears,” she says. She has even been denied a haircut because of the scales on her scalp.
When faced with a chronic condition, it's important to realize that people are reacting to the symptoms and not to you, Garfinkel says. It’s also important to have a close circle of supportive friends and family to talk to and who see you as a person rather than a patient.
“Recognize that the reaction of people outside of that circle is really much less important,” Garfinkel says.
“I’m very lucky that I’m married to someone who loves me for who I am and isn’t afraid to hold hands, cuddle, and be out with me,” Jones-Wollerton says. Friends pitch in, and her father helps out with the children.
Therapy has been a big help. She said she's happy to give her family a break by having someone else to talk to, and it’s good to have a third party who is not judgmental.
Finding support online has been positive, too. She became a member of the National Psoriasis Foundation and goes on the site’s message boards. She also joined a local support group.
In addition, Garfinkel recommends meditation and other relaxation techniques. Besides reducing anxiety and aiding sleep, these techniques may increase your pain tolerance.