When Effie received a rheumatoid arthritis diagnosis, there were few resources that helped her understand the true realities of the condition. Her new book features 119 individual stories from people living with arthritis so that people can feel seen.
Imagine you’re sitting in the exam room of a doctor’s office, the paper on the table crinkling beneath you. You’ve just received a chronic condition diagnosis, and you feel anxious and overwhelmed at the thought of living with this new chronic illness. You nod as the doctor finishes up their spiel about treatment options and the next steps.
But at the end of the appointment, they do something you don’t expect: They hand you a book. The doctor explains that more than 100 people with the same condition shared their stories and experiences in this book.
This is the vision of Effie Koliopoulos, a chronic illness advocate who’s been living with rheumatoid arthritis (RA) since she was a teenager. Effie recently published a book titled “Keeping It Real With Arthritis: Stories From Around the World” that shares 119 stories from people who also live with arthritis. Read on to hear her story and the mission behind the book.
Effie’s arthritis journey started as a teenager. Her juvenile arthritis diagnosis came at 18 years old — which isn’t typically an age people associate with arthritis.
“Right after freshman year [of high school], that’s when I noticed some subtle signs that something may be wrong. I was experiencing a lot of fatigue, just general things that a lot of doctors may just push to the side… they said it was growing pains and nothing to worry about.”
Effie began experiencing additional symptoms, including joint pain, muscle aches, and night sweats. After showing her inflamed hands to her doctor, she finally received a diagnosis and prescription for medication. Now, 19 years later, she maintains a mixture of conventional and alternative treatment approaches.
“Obviously, with the disease I have, there is no set cure. There are medicine and lifestyle changes… but there’s no one answer for everybody.”
Because Effie received her diagnosis so young, she quickly learned that she’d need to speak up for herself to get the treatment and accommodations she needed. Essentially, she says, she was an advocate before she became an advocate.
“I went into the adult world and college with an illness. I emailed professors…, and in appointments with doctors, I needed to speak up.”
But the bulk of Effie’s advocacy work came later. Besides her family and a few close friends, she didn’t openly talk about her diagnosis at first. She needed time to process things herself: “I was 18, and they were throwing so many things at me to do at once, and it was really overwhelming. And I think back then, they didn’t really explain anything in terms that a teenager could understand.”
For a while, Effie had a difficult time making or keeping plans because her symptoms were unpredictable. Her friends had a hard time understanding necessary lifestyle changes, like her new diet. And she wasn’t used to the symptoms she was facing: “The beginning years of my diagnosis were the worst, even though I have more damage now. It’s kind of ironic. But this disease was really raging, and it was new.”
Once her doctors worked with her to figure out a better plan for her body, “things started going better,” and Effie was able to be more active socially. And over time, she says, she grew into the position that has now become a major part of her identity: an advocate.
During college, Effie interned for the Arthritis Foundation. The skills she learned — helping with initiatives, projects, and advocacy for arthritis — served as a foundation for striking out on her own later on. A total knee replacement in 2016 left Effie with time and solitude while recovering. That’s when she decided to start her blog, a passion project dubbed Rising Above RA. The blog shares everything from recipes to inspirational posts to practical recommendations.
“[The knee surgery] really was the catapult to me doing what I’m doing now,” Effie says. She cited other blogs like The Rheumatoid Arthritis Guy and From This Point Forward as her inspiration. Effie also set up a Twitter account in 2017 and an Instagram profile, @risingabovera, in 2018.
One thing led to another, and soon, Effie was working with organizations like Healthline, Good Housekeeping, Everyday Health, AiArthritis, and Creaky Joints. She was even awarded the WEGO Health Rookie of the Year Award.
“I just reached out and said, ‘Hey, how can I get involved?’ With advocacy, you can’t be shy. I reached out, and I networked, and I also was just posting stuff about my experiences for quite a while. And I always knew that I was going to put together a book.”
The idea first occurred to Effie around 2015. She says: “Oh, that would be kind of cool to collect people’s stories.” She envisioned something similar to Brandon Stanton’s Humans of New York but fully focused on people with arthritis. The project didn’t start to take shape until 2019. By that time, Effie was very active on social media, but as an elder millennial, she recognized how social media platforms could easily come and go (what Gen Z kid knows about MySpace?).
“You don’t know what’s going to happen to social media in the future. It could change. It could disappear. That’s why I wanted to create something more tangible.”
Effie compiled the book with the help of a grant — the HealtheVoices Impact Fund Grant. She connected with the HealtheVoices conference (which brings together advocates and activists from all over the U.S.) in 2019 and decided to apply with her idea. She was chosen in 2021 along with 12 other people.
“If it wasn’t for the grant, it would have been very difficult for me to put this book together, just because self-publishing, it does cost a lot,” Effie says.
To gather the stories, 119 of them, Effie reached out to people via her blog, Instagram, YouTube channel, Twitter, Facebook groups for arthritis, and anywhere else she could think of. “It was more like an organic approach, and that way, it took a little longer.”
Effie split the book into chapters focusing on different areas of life that arthritis impacts, such as physical health, mental health, spiritual or faith-based, career, and finances. She asked each person to pick a theme and submit their story.
“I didn’t interview anyone,” she adds, explaining that she wanted each person’s authentic voice to come through. “If I interviewed, it’s different. I didn’t want to take away from people’s voice and experience because they have to tell their story.”
Once she completed the manuscript, Effie used her grant money to work with a hybrid publisher (a company that helps you publish your book for a fee). They worked with an editor, who doubled as a sensitivity reader because she also had arthritis. And before long, “Keeping It Real With Arthritis: Stories From Around the World” was a reality.
These days, Effie spends her time sharing and promoting the book — including author events, TV appearances, and reaching out to top rheumatology hospitals to see if it’s possible to get the book into their waiting rooms.
As a teenager, Effie remembers seeing pamphlets and magazines at her doctor’s offices, but they didn’t show anyone her age. This was before social media came out on the scene, so she was left drifting and digging through AOL or Yahoo forums to find any information she could. Now, she hopes to give other people what she wishes she’d had back then.
She also wants the book to educate people outside the arthritis community — for people who live with arthritis to be able to hand the book to their families and friends and for those people to walk away with a better understanding.
Some stories are serious. Others are lighter. To Effie, this represents the journey. The darker stories aren’t bad — everyone has good and bad days, arthritis or not. She’s glad people shared the good, the bad, and the ugly.
“I think people will see, even in the stories that were a little difficult to read, those people triumphed, too. And they found their path and their light. It’s a common thread throughout the stories, no matter what people shared — people still have hope.”
Medically reviewed on May 01, 2023
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