Growing up with Chronic Illness: How to Adjust and Thrive as a Teenager with PsA

Chronic illness is a complex beast at any age, but it can be especially fearsome when it looms over the hormonally charged teen years.

Living with chronic illness as a young person casts a shadow over daily life, forcing them to grow up quickly as the symptoms demand new cycles of adaptation with each flare-up.

Psoriatic arthritis (PSA) can inflict wide-ranging challenges on someone’s life.

PsA not only interferes with physical functions, but it can also drive a wedge between chronically ill teenagers and their “healthy” peers. This can lead to a range of effects, including adding to the difficulties of maintaining schoolwork and placing a toll on mental health.

The pressure piles on when dealing with a condition that’s largely invisible to outsiders. Others may assume that you’re perfectly healthy, so “why can’t you just get up and carry on?”

Despite the initial overwhelm triggered by a chronic illness diagnosis as a youth, there’s always a beacon of hope.

Chronic illness doesn’t spell an end to a fulfilled life — it just requires a little time to adjust to figure out how to navigate without getting lost in fear.

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What’s it like to get diagnosed with psoriatic arthritis as a young person?

“I was diagnosed with juvenile idiopathic arthritis (JIA) at the age of 18 months, but the diagnosis was revised to PSA when I was around 15 years old,” says Montreal-based marketing content writer Ashley Couto. “So by that point, I was used to having arthritis, but I felt very self-conscious.”

“My psoriasis manifested as painful white blisters on my fingers, and when you’re a teenager, any differences make you more scrutinized,” Couto says.

“I was used to living in an ill body by that point, but this was the first time it was abundantly visible that something was wrong, which wasn’t a great experience,” she adds.

While a relatively small percentage of children with psoriasis are diagnosed with PSA, the condition can still hugely affect the lives of young people when it occurs.

Some, however, grow out of it, says Dr. Hana Patel, NHS GP and Medico-Legal Expert Witness. “In a long-term follow-up study of children diagnosed using the old criteria for psoriatic arthritis, over half had grown out of their arthritis, and under half had persistent arthritis,” Patel says.

How is psoriatic arthritis diagnosed and treated in young people?

Treatments for PSA vary and may be adjusted and recalculated as the patient grows up. Common approaches include using nonsteroid anti-inflammatory drugs (NSAIDs), such as ibuprofen or naproxen, to manage pain and reduce inflammation.

Doctors may also prescribe methotrexate, says Patel. She explains it is “a disease-modifying anti-rheumatic drug that will completely suppress disease activity in many children.”

“To treat this illness in children, biologic drugs can effectively mitigate the symptoms,” adds Dr. Hamdan Abdullah Hamed, MBChB, dermatologist. “For example, Orencia [a brand for abatacept] is a type of drug that can treat children aged over 2 years. For teenagers, treating psoriatic arthritis can be done through physical therapy, including swimming, aerobics, and yoga.”

Treating children and teenagers also requires taking into account more than just medicinal techniques. Doctors also consider the child’s overall health, well-being, and mental strength.

“First, I make sure that the child has a powerful self-identity,” says Hamed. “I remind the parents that their child’s condition shouldn’t be at the center of their lives.”

“Another one is to let the child participate and develop their communication with me about the disease to empower them and provide a voice as the disease affects their body,” he continues.

Reckoning with the impact on teenagers

“It made me self-conscious,” says Couto. “I always used to try to hide my hands because who wants to be the girl with lumpy, bumpy fingers?”

“I was on so many medications for the arthritis part of my PSA that I couldn’t have a lot of normal experiences,” she adds. “I was on prednisone, which made my face fat and round. I couldn’t drink because of my medication, so after my first decline or two, I was never invited [to parties] again.”

Living with a chronic illness among a sea of largely healthy people who cannot hope to understand what you’re experiencing is incredibly isolating, particularly for teenagers who already face intense pressure to fit in and meet their peers’ expectations of normality.

“A diagnosis can feel marginalizing, distinguishing a teenager from the norm,” explains psychotherapist and author of “Tell Me What You Want,” Charlotte Fox Weber. “If a teenager has felt unbelieved, a diagnosis can validate that the issue is real, but it depends on what comes next.”

But sometimes the label may become overwhelming, forging a greater divide between the chronically ill teenager and their peers.

“If a diagnosis turns into a label, it can be limiting and reductive,” says Weber. “It can also evoke incredible anxiety for a teenager if life, health, and longevity suddenly feel precarious.”

How can parents help teenagers with psoriatic arthritis?

Parents play an integral role in managing the outcome of a child’s health, especially when soothing the associated mental anguish. Adults must be the strong ones because children and teenagers need space to be vulnerable without having to manage their parents’ emotions too.

According to Patel, evidence has shown that when parents are distressed in response to their children’s juvenile arthritis pain, it’s considered something that negatively impacts the child’s resilience.

“Providing parents with adaptive coping mechanisms may support them in dealing with their emotional difficulties in response to their child’s diagnosis of JIA and associated symptoms,” she adds.

Parents must find space to process their feelings independently by tapping into a broader support network, preserving neutrality in helping their children deal with their feelings.

“Helping a teenager means different things at different moments, and it’s not just a one-off moment of attunement,” says Weber. “Remaining interested, curious, and loving is everything. Even if you can’t fix the problem or find a solution, just bearing witness to the pain can be a huge solace.”

Learning to manage the effects

“I encourage them to share their feelings about their illness without bottling things up,” says Hamed. “They can also talk to someone else or try to write down their feelings to reduce stress.”

Using visualizations can also be helpful, Hamed says, who advises young people with PSA to visualize their skin getting clearer, as well as “giving fun activities to the child’s exercises, which will help them cope with the symptoms of the disease.”

Getting the support you need and finding a community

“I wish that the school had supported me better because they always made my condition one of ‘othering,’ and they didn’t explain or give context to the other students,” says Couto. “I also wish that they would have realized that it was in some cases dangerous or impossible for me to be like ‘everyone else,’ and most of all, I wish I could have been included more.”

Securing support in an overworked school system is a trial, especially if you’re living with an energy-limiting condition. This is where a support network is crucial.

Enlist family and friends to assist in communicating with the school to gain access to accommodations that will make daily school life more accessible. Ask trusted friends to call out misunderstandings when peers or teachers make misguided, presumptuous comments.

“Never expect a school to be intuitive about what will help,” says Weber. “Consider what might make you more comfortable, and ask for more time or logistical ease when you can.”

Extend beyond your immediate social circle to find connections with people who will understand your life on a deeper level.

It may sound backward to find friends purely based on a shared experience of chronic illness, but it makes a huge difference to have people in your circle who truly understand what day-to-day life is like for you.

Thriving on your terms

“There are benefits to tough life realizations at a young age,” says Weber. “It’s hard to be more aware of health and vulnerability than oblivious peers, but it’s also a huge strength to recognize that life can be a struggle and limitations can open rich possibilities.”

“If you feel forced to grow up faster than you’d like, hold onto the innate right all human beings have to play, create, and be silly,” she adds.

Dream big to identify what you want your life to look like, then adjust accordingly. An illness doesn’t mean giving up on your dreams, it just requires adapting to its changing needs and fitting your goals around them.

“At the end of the day, the experiences you’re having are temporary,” says Couto. “Bullying mostly stops after high school. People become a lot kinder and chiller. This is the hard part, but it gets so much better.”