SWHR spoke with Elizabeth Medeiros, patient advocate and author of “The Girl with Arthritis“ blog, about her journey with psoriatic arthritis. The following blog post captures takeaways from the conversation.
While psoriatic arthritis (PsA)—a chronic inflammatory condition affecting the joints and where the tendons and ligaments connect to bone—occurs most commonly in adults between the ages of 35 and 55, it can develop at any age. Elizabeth Medeiros was diagnosed with PsA when she was 14 years old, on the heels of a juvenile arthritis diagnosis she received around the age of 12.
Despite her arthritis diagnosis transpiring in adolescence, Elizabeth and her mother suspected something was going on much earlier. As Elizabeth’s mom described it to her, when Elizabeth was a toddler, her mom noticed Elizabeth was limping, didn’t have much energy, and seemed to tire out more quickly than children of a similar age. When Elizabeth was 8 years old, she experienced what they know now to be a juvenile arthritis flare. To this day, Elizabeth says, it was the most severe pain she has experienced. Still, despite the symptoms and warning signs, it would take four more years and visiting countless doctors before she received an official diagnosis.
Today, Elizabeth’s lived experience with PsA involves regular joint pain and stiffness, fatigue, and nail psoriasis. She manages her condition with a biologic that has “helped considerably,” but admits that her PsA management has recently taken a back seat to her bone density issues, which may be associated with her PsA. Despite her PsA being ever-present, Elizabeth is focusing on bolstering her bone health by taking the right vitamins and doing weight-bearing exercises.
That prioritization, Elizabeth reflected, has been more feasible due to an unlikely source: the COVID-19 pandemic. While the pandemic affected certain elements of Elizabeth’s PsA management routine, such as exercise, the virtual environment that ensued from it has allowed her to better manage her care and, in certain ways, has improved her quality of life.
Chronic Disease Management During the Pandemic
Prior to the pandemic, Elizabeth was working in an office full-time, and the commute was complicated by PsA. While her employer made certain accommodations, such as allowing Elizabeth to take the subway during “off” hours to ensure getting a seat on the train, it was difficult for her physically. Working virtually has helped eliminate the strain placed on Elizabeth’s body from commuting and working in an office and alleviate her need for massages from her partner, topical treatments, heat pads, and compression garments to treat the pain.
Beyond the pandemic’s effects on her work life, the shift to virtual health care has also been a welcomed change for Elizabeth:
“COVID-19 had a really positive effect overall on health care and accessibility in general. One of the struggles of having chronic illness is having to see specialists constantly—having to take the time out of your calendar, call out of work, and arrange transportation… A lot of people find it difficult to drive, especially during a flare up. I’ve loved being able to see all of my doctors remotely… I really hope they continue that.”
Still, despite these virtual flexibilities, the challenges Elizabeth faces daily are vast – some preceded the pandemic, and others were exacerbated by it. These challenges range from access to public awareness.
Provider-Related Challenges
Elizabeth shared that not only is it difficult to find clinicians who are literate about PsA (she makes a point to search Healthgrades profiles for doctors who have dealt specifically in PsA), but there are also difficulties that stem from provider shortages, such as issues with finding a rheumatologist. (A recent study suggests there is a gap between rheumatologist supply and patient demand, and the problem will get worse over the next 15 years.) The workforce shortage makes it difficult to find a rheumatologist and to get an appointment, particularly with the backlog of patients resulting from pandemic-associated delays.
Insurance-Related Challenges
Also related to access challenges are the challenges posed by insurance, whether in getting denied the doctor you want to see or denied medications. In particular, Elizabeth shared the trials she has faced because of step therapy, an insurance practice that requires certain medications be tried and ‘failed’ first before allowing the patient to access their preferred treatment method. Step therapy, Elizabeth said, impacted her quality of life for years:
“I’ve been declined medications that my doctor genuinely wanted to put me on because I hadn’t gone through other treatments first…I can’t tell you…how many years I’ve suffered and could have had back if I could have gotten on a biologic quicker or on a specific type of biologic quicker.”
Public Awareness-Related Challenges
PsA can also be “very isolating,” according to Elizabeth. In her experience, people tend to discount arthritis pain, believing “it can’t possibly be that bad.” Further, during the pandemic, as someone who was immunocompromised, Elizabeth avoided social scenarios, pushing her farther into isolation. In response to being asked about the one thing she wished people knew about PsA, Elizabeth said:
“I wish [people] gave you the credit that it’s a real disease…It is your body creating so much inflammation and attacking itself. It’s tiring. It’s exhausting. It’s so easy to feel burnt out on it…You’re always fighting an uphill battle to live a normal, average life—to achieve the baseline of everyone else, and if you can achieve goals on top of that, you’re doing amazing. I wish we got a lot more credit in that regard because I don’t think other people realize the true extent of it.”
Leaning Into a Support Community
Fortunately, Elizabeth has found support systems and outlets that make navigating her condition endurable. For support, Elizabeth has found a home in places like the Arthritis Foundation (and the juvenile section of the Arthritis Foundation when she was younger) and in online communities of those with shared experiences. One of those forums was created through Elizabeth’s blog, “The Girl with Arthritis.” Elizabeth began “The Girl with Arthritis” when she was in high school to document her experiences and, ultimately, to share things about PsA she thought could help others, especially young people.
She continues those efforts today. When asked what advice she would give to those struggling with PsA, Elizabeth recommended getting involved with organizations like the Arthritis Foundation and the National Psoriasis Foundation, not only for information, but also to get connected with reliable sources and support systems and learn about your options (whether it is finding a provider, medical treatments, or lifestyle influences like diet and supplementation for disease management). She encourages women living with PsA to not be afraid to look at complementary and alternative therapies, find outlets to relieve stress, and ask for what you need (from providers and loved ones). As someone who grew up with juvenile and psoriatic arthritis, Elizabeth also had recommendations for parents: learn as much as you can and talk to other advocates and families; trust your instincts when it comes to advocating for your child; and remember that children with arthritis are often frustrated and tired from dealing with chronic pain and fatigue (attitudes are to be expected!).
For more information about Elizabeth Medeiros, visit her blog “The Girl with Arthritis” and read some of her work at Psoriatic-Arthritis.com.