What It's Like to Live With Psoriatic Arthritis
An estimated 30% of people in the U.S. who have psoriasis will develop PsA in their lifetime. They understand your confusion. They hear it all the time.
"[People] think that it's just psoriasis, it's just a skin condition," says Summer Scirocco, a 28-year-old from Vidalia, LA, who was diagnosed with the condition two years ago. She says the Psoriasis Foundation says it's more than skin deep. "It really is," she confirms. "And I wish people knew more about psoriatic arthritis. I really do."
Scirocco says people know what psoriasis is now. "But we need to bring arthritis to the forefront. There needs to be more research, more funding. This is ruining my life. The psoriasis part, I can handle. But I can't handle this arthritis. I can't. I just wish more people knew about the severity of the condition and how it affects people's lives."
WebMD spoke with six people who are living with PsA. Here are five things they want you to know.
When It Hit Us, We Had No Idea What Was Happening
For about 85% of the people with PsA, the red, scaly skin of psoriasis hits before the pain of joint disease. Still, many people never see the arthritis coming.
"I'd never heard of it. I never met a person who had it," says LaRita Jacobs, of Tampa, FL. She was diagnosed with the condition in her early 30s. Now, she's 54. "I had neck pain for a while, but I always blamed it on, 'Oh, you sat too long, you did something too long.' It was always something I did."
Jim Bosek was an active 40-something when he first felt joint pain. In 2001, shortly after playing basketball with his son in the driveway, he realized he couldn't walk because he was in so much pain. Bosek was diagnosed with PsA a short time later. (He'd had mild psoriasis for years.) He's been on medications ever since.
"You kind of live with pain for a while. You have little aches and pains," says the 58-year-old retiree in Darien, CT. "But you don't think it's arthritis."
PsA Is Not an 'Old Person's' Disease
Most people believe arthritis strikes adults and older people. But that's not true. In fact, about 300,000 American kids under the age of 16 have been diagnosed with juvenile arthritis. Likewise, PsA can strike no matter what your age.
"For me, personally, I would say my soul is 36, but my body is like 102," says Amy Rabin, of Harrisburg, PA. She's been struggling with PsA since she was about 8, even though she wasn't officially diagnosed until she was 24. Rabin has three daughters, all under 12 years old, who've been diagnosed with either psoriasis or PsA.
Lauren Oickle, a 33-year-old from Seattle, WA, is living with the condition, too. She was also diagnosed at age 24. "I was seeing a spine surgeon -- they were actually thinking of doing surgical intervention -- and I said, 'I heard of this thing called psoriatic arthritis. Could I have it? I have psoriasis on my scalp,' and the spinal surgeon said, 'I didn't know that you did.' I said, 'Well, yeah. I treat it. And it's mild. It's no big deal.'"
But it was a big deal. It forced Oickle to leave college and get a job and insurance to pay for medications to fight the disease.
I Might Look Fine, But I'm Not
Many people who live with PsA call it an "invisible illness." On Twitter, hashtags like #butyoudontlooksick are used to refer to the disease, just as they are for other chronic illnesses.
"The joke that we have around here in my family is, 'You look great.' Appearances are very deceiving with this disease, with this diagnosis," says Laura Kath of Los Alamos, CA. "Just because you look great may not mean you feel great. Or that you're not struggling."
Oickle agrees. "When you have a quote-unquote invisible illness, people tend to think it's psychological, that you're a hypochondriac, or you're lying. You sort of get chastised."
"Oh, I definitely get stares and stuff all the time," Scirocco adds. She says it's really noticeable when she's using a walker. "I think curiosity is what sets in. [People think] 'She doesn't have a leg brace like she's had surgery. Why is she using that?'"
Rabin is no stranger to scrutiny, either. "I'm 36 years old. I look healthy. You'd never know I have a heart condition on top of my PsA. And I struggle to just do normal things. I don't know why arthritis has a stigma, but I think it does. We don't look sick. But if you looked at my bloodwork or my MRI, then you'd see."
We Can Have Good Days ...
"A good day is any day I wake up breathing. As far as the diagnosis is concerned ... a day when the pain levels are 4 or under," says Kath, age 55. She's had 16 orthopedic surgeries that she attributes to her PsA. The first was in 1974.
"Living with psoriatic arthritis, it is a roller coaster disease," she says. "It can be a super-fast roller coaster, where you can wake up and feel great. But by midday, your roller coaster has hit the pit. Or, you can be on a week where your roller coaster is going great, things are going well, things are going wonderful, then, 'Boom!'"
Oickle, who works a full-time job at the University of Washington School of Medicine, says, "Right now is actually the best I've been, and on good days that means I have energy to participate in life like a normal person. And then I go home and I fall apart, kind of. So yeah, having energy, a low-enough fatigue level, and a manageable enough pain level to make it through the workday ... that's a good day."
... But We Definitely Will Have Bad Ones
"When I can't function, that's a bad day. It happens," Rabin says. She often goes through 45 minutes of stretching before being able to get out of bed in the morning. "And I do have three little girls. I worked full-time until I was 30, but after that point, I just couldn't do it anymore because stress, for me, is a trigger. It makes me flare."
For Oickle, a bad day "is being unable to participate in the activities of daily life."
The problem for many with PsA is that the bad days sometimes outnumber the good ones.
"It often feels like the way you might feel the day after a bad migraine or a really bad case of the flu. You're functional ... but you're not really able to do much," Jacobs says. "Where you feel you're a little irritated and tired and your brain just isn't working like it should. The difficulty is it comes on you from like nowhere. And that's frustrating."
With PsA, Fatigue Is as Much a Problem as the Pain
"A huge issue -- and I know this is for my whole community -- is sleep. Every morning when I wake up, I don't have a rested sleep," Rabin says.
Oickle says, "On most days, I get up, I go to work, then I go home. And then I lie down and I try to rest until I have to do it again. And that's a good day. Whenever I'm tired, my body will just sort of inflame. It will get angry. You have to be very focused on the way you spend your energy, or you'll get nowhere."
It's Not That We Don't Want To. It's That We Can't. Or Shouldn't.
"Your brain still has those ideas and all those hopes and all those dreams, and your body says, 'Wait a minute,'" Jacobs says. "And that's really hard. You still have all those passions. But you have to make choices in your life about what is realistic."
"When I was first diagnosed in my early 20s, I was drinking, working, staying up all night. And that just didn't work. I had to adopt a lifestyle of a boring person," Oickle says. She's chucked any kind of social life outside of an occasional get-together with family.
Oickle adds, "Accepting the chronic illness is tough. I think people hide it. But with something like this, where you have to treat it but there's no cure, you kind of have to put your arm around it and make it part of your life and accept it. Because if you fight it, you're not going to win."
We Have Hope
"I'm a researcher, so I'm very optimistic about research innovation. I think things happen fast," Oickle says.
"I wish I could say I could hope for a cure. That's kind of on my long list. But even improvements," Rabin says.
"A cure. It's possible. If we have enough support and enough research, and research funding ... that's the ultimate goal," Scirocco says.
"I want to find a cure. I want to find a cause, and I want to find a cure. And in the meantime, I want to help other people who are dealing with this diagnosis," Kath adds.
"The thing of hope that I have is that, while the biologics and the new drugs out there don't cure things, they certainly can help. That's kind of the measure of hope that's out there. I have good reason to think that my daughter, and my family and ... everybody else who is newly diagnosed, have a much better prognosis than I did," says Jacobs, who has a daughter in her 20s with PsA. "It's a lot less bleak than it was just a decade ago. It's encouraging."