What it's Like to Live with Psoriatic Arthritis During the Pandemic: 'This Disease Does Not Define You'
Everyone has faced unique challenges during the COVID-19 pandemic, but for those with chronic illness, there are especially tough obstacles to overcome. Here's what it's been like for several real people
Prioritizing healthy living throughout a global pandemic has been incredibly difficult for everyone. And many of those with chronic, pre-existing conditions face additional challenges.
Once such condition: psoriatic arthritis (PsA), a chronic inflammatory disease that affects the joints. It affects an estimated 1 million U.S. adults; about 30% of those that suffer from psoriasis will find themselves eventually diagnosed with PsA, as the two conditions can be linked. For many, keeping up with their treatment protocols through the pandemic hasn't been easy, particularly as doctors' appointments become difficult to get and stress (which can trigger outbreaks) can be through the roof.
Several PsA sufferers shared their experiences — and advice — with PEOPLE.
Living with psoriatic arthritis
Chloe Elliott, a content creator in London (pictured below), was diagnosed with the condition in 2013 at age 23. She says she knew something was off when she started to experience joint pain, mainly down the left side of her body. "It started in my elbow, then knee, shoulder, etc.," Elliot, who shares her PsA journey on her "Chloeincurve" Instagram page, says. "Fatigue came next and eventually I was unable to sit up in bed or walk due to the pain in my body."
To manage her condition, Elliott and her doctors put together a treatment plan: a mix of "biologic" medicine, anti-inflammatory medications, medicines to protect her stomach, and prescription painkillers for flare-ups, though she needs those less now that her current treatment protocol has her flare-ups under better control.
Even with her comprehensive management plan, Elliott still gets flare-ups regularly, noting that many different things can cause one: "Changes in weather (mainly cold weather), changes to my drug treatment plan, stress and anxiety, over exertion and too much movement can also impact my body negatively."
For Elliott, whose pain tends to target the same joints (but can spread to any), fatigue is one of the most debilitating parts of the condition. "It is at times completely uncontrollable, unmanageable and hard to really explain to others what it's like to live with," she admits.
Another thing she stresses is that people with conditions like PSA also have to deal with side effects from medications, some of which she says can make her feel worse than a PSA flare-up itself. "Some side effects I get are nausea, cluster migraines, skin rashes, body bruising," she says.
In addition, Elliott also suffers from general anxiety disorder. "I've always been a worrier, but my anxiety developed very quickly after I was diagnosed with PsA," she says. To help fight the anxiety and the effects of PsA, Elliott attempts to do some stretching or yoga every week, depending on whether or not her body will allow it.
Managing PSA in quarantine
"Many medications for this condition suppress your immune system, so I'm more susceptible to infections," Elliott adds, noting that she regularly picks up things like tonsillitis, colds and chest infections. That made her concerned that she was at particularly high risk for catching COVID-19.
Because of that concern, she says,"I had to move away from my fiancé for the first lockdown, as he is an essential worker. I found that really tough mentally and it definitely had an impact on my body physically."
It's also been difficult to not be able to have face-to-face appointments with her rheumatologist; many that she did have planned were cancelled at the last minute. "These conditions can make you feel very lonely, even more so during a pandemic, as your usual streams of support are also under a lot of pressure," she explains.
And the prospect of having to quarantine away from her fiancé as cases soar causes her to live with daily stress that can feel isolating, Elliott says: "I still feel like people don't understand this condition or even consider that people like myself are 'high risk' because of the medications we have to take."
Others have experienced similar stress
The pandemic has also made managing psoriatic arthritis difficult for Consuelo Benson, a 53-year-old from Winnipeg (pictured below). The travel industry consultant received her diagnosis in 2007 at the age of 40 and also suffers from psoriasis and fibromyalgia.
"My type or stage of PsA disease is aggressive, so management is key daily," says Benson. "My various tendons and joints are affected, like my spine and cervical neck. My fingers are affected where it requires cortisone shots for mobility and pain. My elbows, eyes, knees and feet are affected."
Benson explains that during the pandemic, as she's been sitting at home and less active, she's experienced daily flare-ups. She's been sending her husband out to pick up medication, doing her best to keep in touch with her doctors, and otherwise laying low.
"Going out while having low or suppressed immunity is a challenge with lockdown," she says. "Facilities you visit sometimes require standing in line outside or for long periods, which could be difficult for many who have mobility issues." Benson does her best to navigate long wait times and takes a break to sit in line if her feet and back start to aggravate her.
Coping during COVID
Elliott was supposed to receive cognitive behavioral treatment last spring due to a surge in her anxiety, but that was cancelled due to COVID. Her anxiety is at an all-time high, but she's had to try to manage it herself.
She tries to prioritize self-care by making time to listen to music or an audiobook, taking a bath, and going to bed at a decent time. "In terms of managing my condition during the pandemic, I've also been keeping it simple: Resting when my body is telling me it needs to, not over-exerting myself and just trying to keep my anxiety levels as stable as possible -- easier said than done!" she says. "My partner is a great help and knows when I'm starting to burn out."
Her advice to anyone battling PsA right now is to:
- Keep in contact with your rheumatology nurse, especially with any medication-related questions.
- Keep a log of any symptoms you're having during a flare-up that might be different from your usual. Don't Google them! Tell your rheumatologist or specialist nurse.
- Take your meds on time. It's a very difficult time to be chronically ill right now, so help yourself out by setting timers to remind yourself to take your meds.
- Listen when your body is telling you to slow down. "I always know when I've pushed my body too far and need to rest or sleep," Elliott says.
For her part, Benson has been volunteering with the Arthritis Society and has a few tricks to help her manage her stressors, like "an app on my phone accessible to help me do deep breathing exercises throughout the day." She also combats stress by taking a nap or two during the day.
Additionally, she works in movement and stretching when she can, and suggests finding a physical activity that works within your parameters at home, whether that's doing a yoga livestream or walking outside to get fresh air, even if it's just a block or two. She has also started an arthritis support group, and has been sharing her experience of battling PsA during the pandemic on her YouTube page.
"It's important to keep your mental health intact throughout your journeys in lockdown so you don't feel alone with your diseases," Benson says, adding that talking to others with the experience can be extremely therapeutic.
Avery Henderson (pictured at top), a 24-year-old in Ryland Heights, Kentucky, admits that the pandemic has made it easy to want to curl up on the couch — but she's found that being inactive often leads to more pain.
"The best piece of advice I can give to anyone with PsA is to get moving!" Henderson says. "I know you're in pain, but I promise, it helps! Start small and increase from there. It is very hard to want to move when you're in so much pain, but together we can do this. This disease does not define you."
A doctor's take
The good news, says Norman Gaylis, MD, a rheumatologist in Aventura, Florida, is that recent reports suggest that the immunosuppressant medications that many PsA patients are currently on may not actually put them in a higher risk for complications from COVID, as doctors initially thought.
Still, Gaylis says patients should continue to practice social distancing, mask wearing, and proper hand hygiene. He also says it's extremely important for PsA patients to keep in touch with their doctors and stay on their suggested protocols. "The best tip I can offer psoriatic arthritis patients is to make sure your disease is controlled to the maximum degree possible."