It was a summer day in 2014 and Aimee Stephanie Perez found herself caught in a cycle of negative emotions over her psoriasis. She was sitting in her room, angry and envious of others her age who were actively living their lives.
Perez’s life at the time was more isolated. Diagnosed with both psoriasis and psoriatic arthritis, Perez said she couldn’t hold down a job and questioned if she’d ever have another relationship.
“I was sitting at home, kind of ruminating, and in that cycle of whining,” she said. “But then I kind of had this moment of like, ‘You know, what? No. This can’t be my reality forever. We’re not doing this forever. Let’s do something about it.’”
After growing up with a father who let his multiple chronic illnesses run his life — and his family’s lives — Perez says she made the decision not to let that happen to her.
Perez knew from experience what her life could look like if she didn’t do something about it. Her father suffered from multiple chronic conditions. He was diagnosed with ulcerative colitis, rheumatoid arthritis, hepatitis C, diabetes, and prostate cancer.
“Our whole lives kind of revolved around his physical limitations,” Perez said. “We couldn’t plan too far ahead. There was no such thing as, ‘Oh, we’re going to schedule a family vacation in the summer.’ And there wasn’t an option of doing extracurricular activities because his health was so time-consuming.”
Perez watched her father go through a lot of anger over his diagnoses. Some days, she said, he would be OK. Other days, he would isolate himself in depression, forcing the family to isolate as well. She said her father’s chronic illnesses affected his self-esteem and left him bitter.
“We were very much secluded with no support system,” she said. “Everything really did revolve around his physical, mental, and emotional well-being.
“It was frustrating, too, because no one else in my classes or my school was going through the same thing,” she added. “There was something that was very secretive about it, like it wasn’t my business to tell anyone.”
Perez’s own journey with chronic illnesses started when she was 12 and at summer camp. It was her first time away from her family, and it brought out some anxiety in her. Her fears and depression triggered her first real outbreak.
“I stopped eating for a couple of days, and I felt out of control,” she said. “I got to the point where my whole scalp was like one big, massive plaque. I thought, ‘OK, that’s weird.’ But I thought it was just dandruff and that it would go away.”
It wasn’t until Perez was 17 that she got her first diagnosis. During a visit to her dermatologist, the doctor took one look at her and said she had psoriasis. After telling her there was no cure, he prescribed a special shampoo and steroid cream.
The diagnosis devastated her. Her grandmother has psoriasis, and Perez envisioned living a similar life.
“She went through hair loss,” she said. “Her nails on her toes were severely affected. She had scars all over her. I was very close to my grandma, so I saw what psoriasis was — and I was just devastated.”
Things turned around, however. The shampoo worked, and her life calmed down enough for her to graduate from high school. She went on to attend classes at UCLA and got a full-time job as a preschool teacher.
In 2008, everything changed. Perez was robbed at gunpoint by three people, and she experienced trauma for a year as the incident went through the justice system.
“I literally had a gun in my face,” she said. “It was a very stressful time. I would say in less than a handful of months, I had over 80 percent of my body covered in plaques. There was not one spot on my body that didn’t at least have a handful of spots on it.”
Within a year, Perez was diagnosed with psoriatic arthritis as well. Along with the plaques, she had pain and stiffness in her joints, nail pitting, and fatigue.
“There were times where I was really debilitated,” she said. “I lived in an apartment five flights up and I was just like, ‘Oh gosh, I’d rather just get takeout than get groceries up the stairs or do laundry.’”
The plaques and pain left her unable to work, she said. Two years after the arthritis diagnosis, her father died. After that, an ectopic pregnancy resulted in emergency surgery where she almost died. That’s when she found herself at her lowest point.
But the memory of her father brought Perez out of her depression. She realized she had the power to not end up like him. Instead, she decided to find support.
“I went online, and I started getting involved in the National Psoriasis Foundation,” she said. “I started fundraising and doing 5Ks. That turned into going to conferences. It really ignited my advocacy and passion.”
Finding her voice through advocacy helped Perez expose others to her conditions and educate people about psoriasis and psoriatic arthritis. At the time, she said, people would distance themselves from her during an outbreak due to fears of contagion.
“I remember I took some photos [of my plaques], and I didn’t want to do it in a sad way. I just wanted to do normal selfies,” she said. “I wasn’t there for pity. It wasn’t anything like that. I really just wanted people to know we were out there and we weren’t contagious.”
Now, Perez lives in Inglewood, California, and she says she feels like people are changing the narrative around psoriasis and psoriatic arthritis.
Living with multiple chronic diseases has changed how she thinks about her future.
“It definitely has made me think. If I had a child while I’m dealing with the escalation of my chronic illness, I would be in trouble,” she said. “I don’t know if I can take on parenting on my own. Everyone should ask, ‘Can I do this on my own? Can I afford this on my own? Can I have the emotional, mental, physical capacity to handle a child, or a child with special needs?’ Because if you can’t handle all the possibilities that might get thrown your way, you should think about it a little longer.”
Still, for those living with multiple chronic conditions, she recommends taking everything one day at a time. Her goal is no longer finding a cure, she said.
“I don’t really care if I’m clear or not — I just want to feel better,” she said. “I don’t want to struggle as hard. I know we've got an illness, and I know there’s no cure. But I just want to not struggle as much as what it is.”
Perez said she accepts and understands her limitations. Sometimes that means sitting down between tasks or taking things easy. Sometimes, she said, it’s about making the most of each day.
“Honestly, it’s as simple as enjoying the moment,” she said. “I think the best thing to do is to think about today and be right in the moment.
“Don’t start predicting your future for sure. That is a killer because we have no idea what’s going to happen five years from now or even next month.”
Aimee Perez told her story as part of a partnership between GoodRx Health and MyHealthTeam, which creates social networks for people living with chronic conditions. MyPsoriasisTeam is the social network for people diagnosed with psoriasis and psoriatic arthritis. Members share their firsthand experiences, practical tips, and emotional support in a secure online community. Medical experts and specialists share trusted information via articles, videos, and virtual events. MyPsoriasisTeam is free to join and available via mobile app and the web.
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