(LOS ANGELES) — Asking questions, being your own advocate and not becoming complacent are just a few things that actress Katie Lowes wants to instill in those suffering from psoriasis, or any other disease for that matter.
The Scandal star, 35, spoke out for the first time on Thursday about her personal battle with the autoimmune disease that may be visible on the skin and publicized in treatment commercials, but something that most people don’t know much about — even those suffering from it. In fact, around 7.5 million Americans suffer from some form of the disease, according to the American Academy of Dermatology.
“You’re not alone,” she told ABC News of the disease, which is often characterized by often painful and itchy red blotches on the skin. “It’s embarrassing. It’s a chronic disease but it affects everyone differently.”
Lowes was 28 when she was diagnosed and it interrupted an exciting time in her life.
“It was the best year of my life, I just booked Scandal, I got engaged to my then-boyfriend, now-husband [Adam Shapiro] and I think the stress of that year, planning a wedding and having a high-pressure job, really triggered it,” she said.
While some cases can be minor, Lowes said some cases can cover up to 90 percent of a person’s body. In her case, psoriasis started on her scalp, went behind her neck and down her back. She felt uncomfortable on red carpets because of pictures, and even in hair and makeup for Scandal, afraid somebody could tell what was going on.
“It can be incredibly painful. It can limit your life and your lifestyle,” she said, adding that some of those with the disease can’t go to certain places because of the pain or even out of embarrassment.
One of the worst moments came when she had booked engagement photos and “I didn’t show up … that was kind of the straw that broke the camel’s back.” Right then and there she said she decided to kind of “Olivia Pope fix this situation.”
Psoriasis: The Inside Story
With this in mind, Lowes has gotten together with the National Psoriasis Foundation for a campaign “Psoriasis: The Inside Story” to help educate and connect people.
“It’s just a place where people can get on the site, further down the road, people will be able to share their own stories, it’ll be a place where people can come and see what treatments are working for other people, who are being really brave and outspoken,” she said.
Lowes also shared some wisdom from her experience, a yearlong journey, to help others. The first was, “Ask questions.”
“I rode my doctor, man,” she said, laughing. But on a serious note, she said that she tried creams first to combat the symptoms, but that wasn’t enough. So, she says challenge your doctor, so that you can get to an even better place.
If your doctor isn’t working out, she says, “be your own advocate.”
“Be like, ‘I’ve heard of this other doctor and I’m going to try them out,'” she added. “As somebody who has psoriasis, it’s your job to constantly stay on top of these things. Talking to your doctor and talking to your doctor and just being proactive about your specific case.”
The actress also eventually found a biologic treatment that works for her and that some foods act as a trigger or flare-ups.
“When I have any sort of diet that’s high in sugar or yeast, I would find that my body would be very much out of wack,” she added. “For me, it’s also weather, it’s also water. If you go somewhere on vacation and the water quality is different. But my biggest trigger is stress.”
Finally, she said don’t put your health second.
“A lot of times, I put my own personal health to the side, focusing on work or family or getting ahead,” she said. “At the end of the day, you’re just exhausted on your couch and haven’t made that doctor’s appointment, didn’t make that phone call and feel terrible. No matter how small or large your symptoms are, you have to take time out of your day and make this a priority.”
Though she obviously couldn’t reveal any plot points, she shed a little light on what it’s like to be on such a high-pressure, successful show.
“I have no idea what the end of this season is gonna bring,” she said. “I do know Quinn [her character] is engaged to Charlie, a lot of personal life stuff happening with her, which I find very interesting, because the past couple seasons have been about her work life.”
And there’s always the fear of losing a character at any time.
“George Newbern, who plays Charlie, and I are constantly are like, ‘Please, we’ll break up, stay together, we just don’t want to die,'” she joked. “I’m on a show where characters die and this is the best job in the world. It’s just so scary.”
As far as the future tone of the season, the current political landscape in Washington, D.C., may come into play, but not how you would think.
“It did affect our season in that it changed the tone of our season,” she said. “The writers were possibly going down and exploring very dark sides of characters and I think they are now more interested in exploring hope. In our political landscape with a lot of ups and downs, people just need a little bit more of a hero. So, it’s just changing the tone a bit.”
Copyright © 2017, ABC Radio. All rights reserved.