Brian and Lori-Ann Holbrook had been married almost four years when doctors finally put a name to the worsening fatigue, joint pain and skin lesions Lori-Ann had experienced periodically for decades: They were
symptoms of psoriasis and psoriatic arthritis.
“When she came home with a diagnosis, I felt a great sense of relief,” Brian said. “Now they could fix it, or so I thought.”
But following Lori-Ann’s 2012 diagnosis, the New Jersey couple soon realized there would be no quick fix for psoriatic disease. As they grappled with understanding the disease and finding the best ways to manage it, Lori-Ann found herself unable to contribute to the relationship as she had before. More of the household chores fell to Brian, and the two enjoyed fewer fun activities together, as even the slightest exertion left Lori-Ann exhausted.
“I’m not the same wife that he married,” she said. “It was really hard for Brian to understand how I could go from healthy to that in such a short amount of time.”
The disease strained their relationship, as Brian struggled to balance a 50-hour workweek with the demands of caring for a sick spouse.
“I think there was a period of time where I was kind of resentful about it,” Brian said. “There are times when I get frustrated, and then I feel bad because I got frustrated.”
Brian’s feelings are common among caregivers, whose needs are often overlooked when a loved one is diagnosed with a chronic disease. But the burden of caregiving can have a detrimental effect on the caregiver’s mental and physical health.
“You’re going to have feelings of guilt, anger, anxiety and resentment,” said John Schall, CEO of the nonprofit Caregiver Action Network. “They’re natural, and we all feel them.”
Caregivers are more likely than others to develop depression or chronic disease, Schall said, and one study found that 40 to 70 percent of family caregivers exhibited symptoms of depression.
“The caregiver role, especially when caring for a chronic condition, really takes a toll on the caregiver’s own health,” he said.
Learning to cope as a caregiver can improve not only your personal well-being but also your relationship with the person needing care. That was the case for Brian and Lori-Ann Holbrook. After a few difficult years, the couple sought help from a church retreat focused on improving marital communication. Lori-Ann has since become more understanding of Brian’s frustrations as a caregiver; Brian, in turn, has grown more sensitive to Lori-Ann’slimitations and how his attitude affects her.
Instead of psoriatic disease driving a wedge into their marriage, they’ve managed to grow stronger because of it.
“It has brought us closer together,” Brian said. “I have learned to let that be part of our relationship.”
For help coping with the burden of caring for a loved one with psoriatic disease, try these expert strategies.
Realize you’re not alone
A 2009 report by the National Alliance for Caregiving estimated that more than 65 million American adults are caregivers.
“No one should go through this feeling like they’re carrying the weight of the world by themselves,” said Barry J. Jacobs, psychologist and author of “The Emotional Survival Guide for Caregivers.”
Local support groups and online forums, such as the one at Caregiver Action Network, connect caregivers with others who are experiencing similar challenges.
“You have to be able to vent and talk to others who have been in those same shoes,” Schall said.
Communicate your feelings
As in the case of the Holbrooks, proper communication is especially important for couples as they navigate the ups and downs of a chronic disease such psoriasis, Schall said.
“You have to adapt to this new normal,” he said. “The critical point is to keep the lines of communication open.”
Give yourself a break
Caregivers often struggle to make time for themselves. But studies show that a few hours each week of respite — anything that allows you to temporarily step away from the responsibilities of caregiving, be it a walk in the park or a trip to the movies — is a critical coping mechanism.
“Not only is it all right, it’s crucial,” Schall said. “If you can’t get that respite, you will, over time, become a less effective caregiver.”
When friends and family say, “Let me know if there’s anything I can do to help,” take them up on it.
“Be prepared with a list of five to 10 specifics,” Schall said.
Even one home-cooked meal, or a ride to a doctor’s appointment, can help ease the caregiving burden.
Take care of yourself, too
It’s easy to let your own health slide when you’re focused on someone else’s.
“Many caregivers who are stressed do too little to care for themselves,” Jacobs said. Eating right, exercising, going to the doctor and getting enough sleep are important to combat the detrimental effects caregiving can have.
“You really do have to take care of yourself first,” Schall said. “If you’re not strong enough to care for your loved one, then you’re both going to be in trouble.”
Download this free fact sheet on the emotional impacts of psoriatic disease.
Photo by Kristen Driscoll Photography LLC
Driving discovery, creating community
For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.