In 2017, then 37-year-old Jennifer Weaver started a new medication called a TNF inhibitor for her rheumatoid arthritis. Though her joints started feeling better fast, she began developing painful pus-filled sores all over her body. First on her lower leg, then they spread to her scalp.
“I was absolutely horrified,” says Weaver, who lives near Vancouver, WA, and hosts a podcast about living with chronic disease called My Spoonie Sisters. “They’re painful, and then they burst. Then there’s this clear liquid coming out. Then they dry out and peel, and you have this skin falling off of you.”
Assuming she’d picked up some kind of superbug at the gym, she went to urgent care where she received a prescription for antibiotics. But instead of getting better, the sores continued to spread and get worse.
“It started on my hands, feet, and legs, but as it progressed, I had it on my scalp, inside my ears, in skin folds, like where a bra touches, anywhere that you would wear snugger fabric, it irritated the skin, and I would start getting pustules.”
It was at her next appointment with her rheumatologist that she learned she had generalized pustular psoriasis (GPP), which, in her case, had been a rare allergic reaction to her arthritis medication.
“My doctor said the medication activated the psoriasis in my body, so it’s not going to just go away,” Weaver says. “I have it for the rest of my life.”
That meant Weaver would have to learn how to live with it.
Unique Challenges of Living With GPP
Unlike the far more common plaque psoriasis, GPP flares can be extremely unpredictable.
“Some plaque psoriasis patients know that their skin gets worse in the wintertime, for example, or in the summer with heat and sweat,” says Veena Vanchinathan, MD, a dermatologist who sees patients in the San Francisco Bay Area. “GPP is characterized by such a steep up and down. It’s like a rollercoaster.”
The sores that can take over a large surface area of your body at any time may seem to suddenly barge in and take over your life. You can develop hundreds of tiny pustules that may merge together and form large pus-filled sores. Besides the pain, they are unsightly and may cause others to want to keep their distance.
“When people see pus, they think infection, so they don’t necessarily want to interact with somebody with GPP because they don’t want to get the same skin condition, not realizing that it’s not infectious or contagious,” Vanchinathan says. “That’s a difficult emotional burden for patients.”
This may explain why, according to Vanchinathan, people with GPP have higher rates of depression and anxiety than people with other, less severe types of psoriasis. “The flares are so unpredictable and have a much higher impact on quality of life.”
Wishing not to be seen or avoiding explaining that their condition isn’t contagious, many people with GPP may, knowingly or not, isolate themselves during flares.
“You don’t want questions,” Weaver says. “You don’t want people grossed out, thinking that you can give it to them.”
But isolation may sometimes make depression and anxiety worse.
Overcoming Isolation With GPP
Weaver took time to cry and grieve.
“I cried my eyes out. Lots of tears. Lots of feeling sorry for myself, but eventually, I had to just stand up and say, ‘This is what it is. I still have plenty to offer the world.”
While she expected people to step away from her or look at her with disgust, that rarely happened. “Most people are decent,” she says.
Here are some tips to help you get back out into the world and stay connected.
Choose clothes wisely
To help you feel more comfortable going out during a flare, wear soft loose-fitting long sleeves and long pants to cover up the pustules as much as possible.
“That could certainly be a helpful strategy, provided that the clothing isn’t rough or made of anything that could potentially further exacerbate the skin,” Vanchinathan says.
Pustules often appear on the scalp as well. You might feel more comfortable in a hat or head scarf.
While some people get sores on their face, Vanchinathan doesn’t recommend trying to cover it with make up. “I don’t think it would be successful, and I’d be concerned it would further irritate the skin.”
Explain to those close to you
Some people might not understand your condition and want to steer clear of you. Others may be concerned and want to know that you are OK. Think ahead about how you might respond to looks and questions.
If you choose to talk about your condition with others, Weaver recommends you cover the following key points:
- You’ve seen a doctor.
- You’re not contagious or infected with anything.
- The pustules do hurt.
“Share your story, correct misconceptions, and help others understand what it’s like to live with a visible chronic illness,” Weaver says. “This not only raises awareness but also fosters empathy and support from those around you.”
It might also be helpful to notify employers or co-workers about your condition both to make clear that you are not spreading a contagious disease around the office and to make clear that painful flares are unpredictable and may interfere with work.
“It’s probably best to have this conversation when you’re not flaring,” Vanchinathan says.
Find others with GPP
Living with a rare condition, especially one that might make you want to hide sometimes, can be very lonely. You may feel more comfortable and less alone in the company of other people who have the same condition.
Try the following channels to connect with support groups or 1:1 peer support:
- Local medical centers
- The National Psoriasis Foundation through their Support and Community Page
- Social media platforms
- Online patient community platforms, such as Inspire
“You don’t have to face this journey alone,” Weaver says. “Connecting with others who understand what you’re going through can provide encouragement, practical tips, and a sense of belonging.”
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
Veena Vanchinathan, MD, board-certified dermatologist, San Francisco, CA.
Jennifer Weaver, rheumatic and psoriatic disease advocate and host, My Spoonie Sisters, Vancouver, VA.
