Alisha Bridges remembers the frustration of trying to share with her dermatologist what it was like to live with psoriasis.
"He didn't really specialize in psoriasis; it was almost as though I was telling him more about psoriasis than what he knew," said Bridges, 27, while remembering an office visit she experienced years ago. "I just felt that he wasn't listening to my concerns."
Bridges, an Atlanta resident who was diagnosed with psoriasis at age 7 and who has seen a number of doctors over the years, said she now sees a physician who is supportive and who truly cares about her everyday life living with the disease. She knows not everyone living with psoriatic disease has the same productive and positive relationship with their dermatologists and rheumatologists, but said having that allows patients to receive the best possible care for their specific needs relating to psoriasis and PsA.
"Patients need to be honest, and doctors have to approach each person with these diseases as an individual, because everyone experiences something different," said Bridges.
"I don't remember ever having a conversation about the psychological ramifications of this disease."
This is especially true when the diagnosis is psoriatic arthritis, said Dr. Dafna Gladman, professor of medicine at the University of Toronto and senior author of the study.
Gladman said this happens because while doctors focus mainly on joint health — looking at things such as swelling and joint pain — patients are more likely to share how they're feeling overall about their health.
"Patients don't necessarily focus on the specifics," Gladman said. "They don't necessarily take the time to really think about why they don't feel well. They don't get to that level of detail. They'll just say things like, ‘I'm not sleeping well.'"
Gladman said that, at the same time, doctors may not always be asking the right questions. As a result, doctors and patients aren't connecting in the best possible way to ensure optimal treatment of the disease.
That is critical, because patients with psoriasis can be affected in dramatically different ways. For example, someone with plaques on 30 percent of his or her body may not be having symptoms and may not want to use aggressive therapy because that person doesn't consider the risks or costs worth the potential reward. On the other hand, someone with limited disease may have extreme itching or pain, or be very self-conscious about appearance.
The right plan for an individual patient cannot be determined unless both parties are very honest about symptoms and their effects on quality of life, and after an open discussion about potential risks.
"The clearer the information doctors get, the easier it is for them to diagnose a treatment plan," said Gladman, adding that she believes more doctors — and their patients — are working together to improve communication and get on the same page about treatment.
Emotions play critical role
Bridges and Susan Freeman believe the emotional impact of these diseases and how they affect quality of life play a critical role in how well patients and doctors work together. Freeman, who lives in New York City, said that although she is grateful for the top-notch care she receives from her highly qualified dermatologist, exploring the emotional toll of her disease hasn't been a priority.
"I don't remember ever having a conversation about the psychological ramifications of this disease," said Freeman, 68, who was diagnosed with psoriasis at 20. "It is really important."
"Patients need to be honest, and doctors have to approach each person with these diseases as an individual, because everyone experiences something different."
Both Bridges and Freeman said it is critical for patients to openly share their struggles with their health care providers, but it's not always easy. Abby Jacobson, a physician assistant at Family Dermatology of Reading, Pennsylvania, agreed, saying patients often keep certain aspects of their disease to themselves, disqualifying their concerns or dismissing them as unimportant. Patients may be embarrassed about their disease, particularly if it is affecting sensitive areas such as the groin.
In her practice, Jacobson believes strongly in getting to know her patients not just as patients but as people, something not every health care provider does, she said. For health care providers who don't take the time, they and their patients often aren't on the same page when it comes to assessing the severity of their disease.
"Is that because the practitioner isn't asking the right questions or delving deep enough? Maybe," she said. "The topics are very personal and hard to broach. Patients need to make us more aware, tell us what they think. Severity is in the eye of the beholder."
Becoming Citizen Pscientists
Bridges said one of the conversations she and her fellow Citizen Pscientist participants are having is that doctors need to know that when they ask patients, "What does remission mean to you?" they'll likely receive a wide range of answers.
"For me, I'm clear without medicine, but another lady could say she feels like if she found a medicine that helps clear her up, then she is in remission," Bridges said.
Once the conversation begins, physicians and patients will find their visits are more productive, Jacobson said.
"Be an advocate for yourself," she said. "If you feel your health care provider isn't listening to you, tell them, or find someone else to see if that relationship feels different. You have to tell us how bad it is."
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.