Living With Psoriasis and Psoriatic Arthritis: Changing the Narrative
Key takeaways:
Aimee Perez grew up in a household that didn’t have much of a support system for dealing with chronic conditions.
Once diagnosed with psoriasis, Aimee says she thought her life was over.
Eventually, she changed her attitude and decided not to let her conditions run her life, but to run her life accepting her conditions.
It was a summer day in 2014 and Aimee Stephanie Perez found herself caught in a cycle of negative emotions over her psoriasis.
Sitting in her room, she says, she found herself angry and envious of others her age who were actively living their lives.
Aimee’s life at the time was more isolated. Suffering from both psoriasis and psoriatic arthritis, Aimee says 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 says. “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 someone who let their multiple chronic illnesses run their life, and their family members’ lives, Aimee says she made the decision not to let that happen to her.
Living with someone with multiple chronic illnesses
Aimee knew from experience what it 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,” she says. “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.”
Aimee says he also went through a lot of anger over his diagnoses. Some days, she says, he would be OK. Other days, he would isolate himself in depression, forcing the family to isolate as well.
“We were very much secluded with no support system,” she says. “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 says. “There was something that was very secretive about it, like it wasn’t my business to tell anyone.”
She says her father’s chronic illnesses affected his self-esteem and left him bitter.
Aimee’s journey with psoriasis begins
Her 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 says. “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 she 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 Aimee. Her grandmother has psoriasis, and Aimee envisioned living a similar life.
“She went through hair loss,” she says. “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. Robbed at gunpoint by three men, she went through trauma for a year as the incident went through the justice system.
“I literally had a gun in my face,” she says. “It was a very stressful time. I would say in less than a handful of months, I had over 80% 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.”
Another diagnosis
Within a year, she 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 says. “I lived in an apartment five flights up and I was just like, oh gosh, I'd rather just get takeout then get groceries up the stairs or do laundry.”
The plaques and pain left her unable to work, she says. 2 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 says, she found herself at her lowest point.
But the memory of her father brought her out of her depression. Sitting there, she says, she realized she had the power to not end up like him. Instead, she decided to find support.
Finding a new attitude
“I went online and I started getting involved in the National Psoriasis Foundation,” she says. “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 her to expose others to her conditions and educate people about psoriasis and psoriatic arthritis. At the time, she says, people would distance themselves from her during an outbreak out of fears of contagion.
“I remember I took some photos [of her plaques] and I didn’t want to do it in a sad way. I just wanted to do normal selfies,” she says. “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, Aimee lives in Inglewood, California, and 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 says. “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 says.
“I don't really care if I’m clear or not — I just want to feel better,” she says. “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.”
Aimee says she accepts and understands her limitations. Sometimes that means sitting down between tasks or taking things easy. Sometimes, she says, it’s about making the most of each day.
“Honestly, it’s as simple as enjoying the moment,” she says. “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 5 years from now or even next month.”
Aimee told her story as part of a partnership between GoodRx Health and MyHealthTeams, 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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