Elaine Scilley has lived with psoriasis for more than 11 years. In 2013, she found herself at her lowest point when her youngest child was three months old and breastfeeding. Overnight, a few small patches of psoriasis spread to cover her entire body, leaving only her face and neck clear.
“I began to hide my body from my husband as I thought he would be repulsed,” Scilley says. “I wouldn’t go to the beach or pool. I felt depressed, embarrassed, and incredibly lonely.”
According to the National Alliance of Mental Illness, 1 in 5 people in the United States will be affected by mental illness in their lifetime. Some of those people will be living with psoriasis. In fact, the prevalence of depression is higher in patients with psoriasis compared with the general population.
Psoriasis is more than a skin condition, as it is commonly referred to. It’s a chronic autoimmune disease that impacts more than 8 million Americans, 60 percent of whom say their disease is a dominant issue in their everyday lives, according to the National Psoriasis Foundation. A report in the American Journal of Preventive Medicine, found that people living with psoriasis had significantly more “mental distress” and were about 1.5 times more likely to report severe depression than those without the disease. This is the part that many people don’t see —the ways in which psoriasis can eat away at one's mental and emotional wellbeing.
Overcoming the Stigma of Psoriasis
Since psoriasis often presents as red, scaly skin lesions, it may elicit negative reactions, including fear and disgust. As a result, psoriasis can cause social stigma, leading to depression and isolation, according to an article in the US National Library of Medicine National Institutes of Health.
Alisha Bridges has lived with psoriasis since the age of seven. She recently posted a letter online that she wrote in 2011, titled My Suicide Letter. “I always wanted to model or play sports,” she says. “But with psoriasis covering 90 percent of my body, both of those options were out the window. I didn’t want to do anything. I was at a loss. Sometimes I think having psoriasis ruined my life.”
In her letter, Bridges wrote, “Today it all ends, and it ends by me killing the part of myself that feels so ashamed. I kill that part of me that hides. … I kill the part of me that doesn’t want to explain my condition to people. …I kill all the hurts and fears!” She says now, that “this letter was the beginning of my advocacy.”
The Tricky Role Psoriasis Can Play in Mental Illness
People living with psoriasis show “increased levels of anxiety, depression, suicidality, vocational impairment, social impairment, and impairments in relationships and intimate functions,” says Dr. Richard Fried, a board-certified dermatologist and clinical psychologist at Yardley Dermatology Associates who sits on the medical board for the National Psoriasis Foundation. Because of these burdens, people with psoriasis are often “unaware of the degree to which their psoriasis has impaired their quality of life.”
Dr. Fried also points out that those most severely affected by their psoriasis are often selected for studies, leaving a potentially larger group of significantly affected individuals unspoken for. This may be one reason that psoriasis’s effect on mental health is frequently underestimated. “Fatigue, mild to moderate apathy, indifference, lack of pleasure in food, travel, and intimacy are often inappropriately attributed to age and other life factors,” says Dr. Fried. “It’s only after the refinement of the clinical symptoms of psoriasis and the detrimental effects of internal inflammation are understood that the [patient] can realize how much their disease had diminished their engagement and quality of life.”
“Chronic illness …is a challenge for people emotionally and mentally. The day-to-day burden of the disease, like a lowered immune system and chronic fatigue, affects people’s mental states the most,” says Dr. Robert Goldstein, a psychiatrist in private practice who has treated patients with chronic autoimmune disease. “Chronic fatigue, which is a common symptom with those who have an autoimmune disease, can affect a person’s ability to travel, play sports, and participate in extracurricular activities.”
When Secondary Symptoms and Meds Mess With Your Mental Health
People living with psoriasis are more likely to have other diseases that are linked to inflammation, such as heart disease and diabetes. “If you have a disease that creates enough inflammation that it’s affecting your heart, it’s also very hard for your brain to function well,” said Dr. Suzanne Olbricht, associate professor of dermatology at Harvard Medical School, in an article in Harvard Health Publishing.
A lack of answers can also ramp up patient anxiety. People living with an autoimmune disease are often misdiagnosed or stay undiagnosed for long periods of time because they have a unique presentation of the symptoms and disease, according to Dr. Goldstein. “It may take years to make a proper diagnosis which can …prevent [patients] from accessing the treatment they need. That can take a toll on a person’s mental health and push them into isolation without a drive to seek the help they may need.”
Dr. Goldstein recommends that psoriasis sufferers see a rheumatologist/immunologist with a specialty in autoimmune diseases. He also stresses that many medications for immune disorders can cause psychiatric problems. “If a patient has a sudden change in mental health,” he says, “they should voice their concerns to their doctor and see a mental health expert immediately.”
Anxiety can sometimes prevent patients from understanding how to use their medication properly and from adhering to a proper medication schedule. “[That understanding] is vital in managing life with psoriasis,” Dr. Fried says. “After physicians demonstrate how medications should be used, ideally a nurse or another trained individual would be motivating for patients, especially during the initiation phase when they have yet to gain confidence in the effectiveness of their medication.”
Dr. Fried also encourages patients to seek out pharmaceutical information to provide concrete usage information as well as organizations such as the National Psoriasis Foundation that provide a wide range of information and patient support.
Hope on the Horizon
A recent study in Arthritis Care & Research of the experiences of people living with psoriasis and psoriatic arthritis identified six themes that characterize their typical emotional states. Among them were feeling “demoralized by inadequacy or burden of therapy,” which included “disappointment by unmet expectations of treatment benefit” and “disempowered by lack of personalized care.” The researchers concluded that improvements in therapies and treatments (or at least realistic expectations up front), and psychosocial support could help limit depression and embarrassment experienced by some people with psoriasis.
Along the way, people living with psoriasis are finding ways to diminish both their physical and emotional symptoms. “Light therapy has had a long-lasting effect [on me],” says Scilley. “I feel much better now. I was even able to continue breastfeeding my son during my light therapy treatments.”
Scilley believes it’s important that people living with psoriasis realize that they are not on their own. “Seek out others who are living with psoriasis because understanding you’re not alone helps tremendously,” she says. “Also, don’t be afraid to talk to your doctors and voice your concerns if you feel a medication isn’t working.”
Bridges echoes the importance of finding a support system. “I cope by talking to people in my psoriasis network, expressing my hardships, as I did with my letter, advocating with the National Psoriasis Foundation, and being proactive about my treatment options,” she says. “I used to ask God to take it away from me, but now I just ask him to make me strong enough to deal with it and help encourage other people dealing with the same issues.”