What’s It Like Living With Psoriasis?

For more than 8 million Americans, living with psoriasis is a day-to-day reality. The common autoimmune condition features an overactive immune system that causes skin cells to grow and proliferate too rapidly. These excess cells build up on the surface of the skin in itchy, red, painful and scaly patches, called plaques, that can be disruptive and, at times, debilitating. For many patients, they can also be unsightly and embarrassing.

Psoriasis is an incurable, chronic condition, and while there are now many treatment options available to help control the symptoms, for the millions of people living with the disease, keeping symptoms under control is an ongoing struggle that requires vigilance and diligence to adhere to treatment protocols and the tenets of healthy living.

[See: 7 Surprising Things That Age You.]

A Lifetime of Itching

Because it’s a chronic, incurable autoimmune disease, patients with psoriasis will have it for life. Many patients experience periods when it’s better and times when it’s worse, called flareups.

When now-37-year-old Abigaile Newkirk of Egg Harbor Township, New Jersey, was first diagnosed with severe psoriasis at just 3 years old, she says there weren’t many options to make her feel better. “Back then they didn’t really have anything that could help psoriasis. I was in the children’s hospital for over a month and they would put me in a tanning bed,” she says, to receive an early version of phototherapy that helped bring down the worst of the inflammation so that Newkirk could be discharged. Phototherapy is still commonly used to treat psoriasis, as certain UVB rays can penetrate the skin and slow the growth of cells. This is in part why some psoriasis patients tend to experience an improvement of symptoms in the summer — they’re outside in the sun more.

Once the worst of the inflammation had been controlled, “they sent me home with a sunlamp. I would lie under it for 15 minutes, 2 or 3 times a day. I did that for years,” she says, because back then there were few medications available to help soothe the itchy and painful skin inflammation that psoriasis causes. “I was probably 7 or 8 when I started finally having a steroid cream,” she recalls. Topical corticosteroid creams, sprays and ointments are still a common first-line therapy for dealing with many cases of psoriasis. These medications reduce inflammation and help soothe irritation.

Newkirk says she’s “always had a really bad case,” that can cover up to 80 percent of her skin during a flareup. “It’s on my arms and body, and on the joints — on my knees and elbows. I’m lucky that it’s not on my face,” she says. Although psoriasis has a strong genetic component, no one else in Newkirk’s family has it. “Even my twin sister doesn’t have it,” she says.

Being the only one with psoriasis in her family and her school wasn’t easy for Newkirk as she was growing up, but the symptoms got worse later on after she got pregnant with her first child. “The flareup that started in pregnancy never went away,” she says, and this isn’t an uncommon problem among women with psoriasis. The National Psoriasis Foundation reports that individual experiences of flare-ups during and after pregnancy vary widely, but it’s thought that fluctuations in hormones cause the shift in psoriasis symptoms. “Many women see an improvement in the severity of their psoriatic disease during pregnancy, some see no change in symptoms, while others report their symptoms gets worse. Many women report a flare in their psoriasis and/or psoriatic arthritis shortly after delivery.” For Newkirk, pregnancy and delivery exacerbated her symptoms significantly.

But while she was struggling with intensified symptoms, becoming a new mom also offered a path to greater self-acceptance. “My life was different. I was expecting a baby and you can’t take medications, so you have to just let it go. It never got better. My skin’s bad, but I have my good days. Some days, I think, ‘this sucks, and I’m itchy.’ But some days are good.”

Newkirk has also developed psoriatic arthritis, a type of inflammatory arthritis that impacts about 30 percent of people with psoriasis. She says she didn’t realize what was happening at first. “I was jogging every day and my knee started swelling up. I went to the doctor, who sent me to a rheumatologist,” where she got the diagnosis. Though she says it’s not a big problem currently, it’s something to keep tabs on as she ages. Knowing what’s going on with your body is all part of living with psoriasis, as the elevated inflammation associated with psoriasis can cause complications such as heart disease, arthritis, diabetes, kidney problems and thyroid issues.

[See: 12 ‘Unhealthy’ Foods With Health Benefits.]

Living Better With Psoriasis

Dr. Howard Bruce Pride, a dermatologist with Geisinger in Danville, Pennsylvania, says one of the best ways for patients to live better with psoriasis is to maintain “as close to their ideal bodyweight as possible,” because being overweight or obese is known to make symptoms of psoriasis worse. “Psoriasis is distinctly harder to control in people who are very overweight, and complications from some of the medications that we use will be more common in people who are overweight,” he says.

In addition, “there are side metabolic complications that go along with psoriasis, such as heart disease, glucose intolerance or diabetes and high cholesterol that are felt to be related to having psoriasis. All of those are exacerbated by being overweight,” so controlling your weight, exercising regularly and eating healthy food is paramount for improving your experience of living with psoriasis.

For some patients that means avoiding certain foods that are known triggers. In Newkirk’s case, tomatoes, citrus, alcohol and processed foods seem to cause flare-ups. “Tomato sauce and orange juice are just a complete no-no. My body just reacts” to compounds in those foods. Newkirk says she watches what she eats, but “I’m not on a strict diet.” Still, “I always see a big difference if I’m having a junk food week,” and she notes that when she smoked as a younger adult, that made her symptoms “really bad.” Nowadays, when she notices that symptoms have worsened, she’ll course correct and “eat as clean as possible,” and that usually helps improve symptoms.

Pride says that it’s “hard to find good evidence that eating a certain diet has a profound effect on psoriasis,” but many patients do find that certain foods or patterns of eating are problematic, triggering a worsening of symptoms. Some patients find that eating red meat, eggs and dairy products, processed foods, alcohol and gluten can all trigger an increased autoimmune response in the body. On the flip side, foods high in omega-3 fatty acids (fatty fish such as salmon and sardines) may reduce inflammation in the body. Fruits and vegetables, which are high in antioxidants that fight oxidative stress and inflammation, are also thought to be helpful for patients with autoimmune conditions. Including anti-inflammatory oils (olive, coconut) and spices (turmeric) may also improve symptoms in some patients.

The Emotional Impact of Psoriasis

All the nasty physical symptoms aside, perhaps the toughest aspects of living with psoriasis are the social consequences and mental health impact of the disease that many patients experience. For Newkirk who developed the disease very young, having severe psoriasis led to a sometimes less-than-pleasant school experience. “I was bullied relentlessly in school. I spent most of my life embarrassed by it. I wouldn’t wear short sleeves or shorts. But now that I’m older and have two daughters,” she says she has gained a different perspective on having psoriasis. “It just makes you different from anybody else.”

That being different can be part of the problem. “Stress is without question a trigger for most people with psoriasis,” Pride says, “and it feeds on itself. The worse your psoriasis is, the worse your stress about it is,” which can lead to an exacerbation of symptoms in a never-ending cycle. But you can break this pattern by taking care of yourself. “Reducing stress is all part of leading a healthy lifestyle — eating correctly, getting enough sleep, exercising in an appropriate fashion. All of that can help,” he says.

[See: How to Practice Yoga When You Have Arthritis or Another Chronic Condition.]

All of this speaks to the fact that living with psoriasis isn’t easy, and it’s a constant companion for those who have it. “It affects everything. Your whole life. You live your life differently,” Newkirk says, noting that she has often felt jealous about how some people can simply toss on a tank top and shorts without a second thought. “They don’t have to think about it. I wish I could wear shorts without feeling like people are looking at me,” she says.

Although she knows that newer biologic drugs have revolutionized the treatment and management of psoriasis, Newkirk has eschewed these powerful medications because of potential side effects. “I’ve chosen not to because there’s cancer in my family. I don’t want to take anything that has those risks.” For her, the risks aren’t worth the benefit, and each patient needs to make her own decision about which treatments are acceptable.

However, the arrival of these new blockbuster drugs over the past 10 or 15 years (along with their big marketing budgets) has indirectly helped Newkirk feel better. As awareness of what psoriasis is has increased among the general public, that has allowed her to feel more comfortable in her own skin. “When I was young, nobody knew what psoriasis was. But now, you see it everywhere — on commercials, on billboards. I think that’s the best thing that’s happened. The more people who understand it and understand that it’s not contagious,” the less self-conscious people with psoriasis will feel, she says. And that can make everyone feel just a little bit better.

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What’s It Like Living With Psoriasis? originally appeared on usnews.com

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