Effie with her book: Keeping it Real with Arthritis
“The common thread I have noticed throughout the years is that of perseverance and hope.”
My name is Effie Koliopoulos and I was diagnosed with juvenile arthritis - more specifically, polyarticular juvenile idiopathic arthritis at the age of 18*. My journey to diagnosis is one that many kids and parents can relate to. To put it simply, I was told nothing was wrong. So for three years I held onto the belief that my symptoms were just ‘growing pains.’ However, when the joint pain, muscle aches, and fatigue worsened it was no longer considered normal in the eyes of medical doctors. It was only when I started to show visible signs of joint enlargement on my knuckles on each hand in a symmetrical fashion that my pediatrician, at the time, decided it was best to refer me to a specialist. This was a rheumatologist who diagnoses and treats various forms of arthritis.
From sophomore year to the last half of senior year of high school I was suffering in silence and it showed in my grades. I was lucky to have even managed to graduate considering how poorly I was doing. On top of that, I was being bullied severely both in-person and online. The emotional stress from that didn’t help matters.
Luckily, from then on, my diagnosis was a very quick process. There was no “I think this may be another disease,” from doctors. Though that didn’t stop me from getting a second opinion at Mayo Clinic, which was a six month wait. Shortly after that, I started on treatment. But while I waited, I tried alternative medicine and lifestyle changes. This proved to be semi-beneficial and definitely not the full answer for me.
Over the years, I found that it is not about following the trends but following what is good for your body. I discovered what worked for me by trial and error, and breaking up with a few doctors who weren’t investigating deeply enough. It was when I connected with rheumatologists and functional medicine practitioners who not only listened to my concerns but took the time to answer my questions, working with me as a team, and treating me like a person rather than a numbered patient that my health started to improve. Of course, over the last 19 years I have had my fair share of setbacks, obstacles and challenges. I have also had months and years where I was doing extremely well. I credit this to the medication and lifestyle changes I made to my diet, mindset and activity level.
I truly have gone through the good, the bad and the ugly aspects of this disease. From being bedridden and not able to walk to the restroom without assistance, to walking a 5K with no issues, is an example of the small victories and big triumphs during my journey. After needing to undergo a total knee replacement at the age of 29, I felt compelled to get back into the world of arthritis advocacy to connect with others in the community. This ultimately led me to want to share other people’s stories after seeing how many people have gone through similar, yet different, experiences to me. The common thread I have noticed throughout the years is that of perseverance and hope. Those in the arthritis community have a sense of comradery that is truly unmatched. We support one another and cheer each other on, no matter what phase we may be in on our journey. Support was one thing I wish I had more of in the early years of my diagnosis. While I had the support of family and friends, I was still the only person my age and in my family who was living with this particular disease.
As I went onto college there were many resources available to make the transition easier, and with the proper treatment, I was able to excel in my studies. The one thing I learned is not to be afraid, shy or embarrassed to ask for help. This was never an issue for me once I went on to study at my university. In fact, I took the initiative to email my professors and plan my schedule in advance. It turns out, professors and students alike were not judgemental and had empathy because they too, had their own health struggles. As I look back on my journey thus far, the biggest setback for me was my delayed diagnosis. Those few years are when the irreversible joint damage was occurring in my right wrist, and the first two knuckles of each hand. It is easy to fall into the “what if” I was diagnosed sooner and the "should haves" and "could haves". But that doesn’t help matters, it makes it worse. What helps is taking the action you can take now in the present moment and moving forward.
Easier said than done of course, especially if you have lost trust in the medical system and medications that have failed. I personally didn’t find the right medicine for me until almost a decade later in 2015. During this time when the medication I was put on initially was not working for me, I really started to dig even deeper into alternative and functional medicine. Over time I was able to address nutrition, hormones and gut health on a more profound level that actually had me seeing results. Now this wasn’t something that was a cure for me and didn't lead to remission either. I am actually still on the mission towards remission today. I know I will get there, and so will many others. We have to be proud of ourselves for showing up and trying, and take it one day at a time. Sometimes an hour at a time on bad days.
We have to give ourselves grace, empathy and compassion and try to extend this to those in our lives who may feel relatively helpless because they are also doing their best and don’t have the answers either. The disease not only has impacted me directly, but it has affected my family indirectly on an emotional and financial level. At one point, my parents were paying out of pocket for my medication which was sometimes over one thousand a month for a single biologic four pack of syringes. This was until we found assistance to cover it. Eventually working a full-time nine to five job became difficult for me to do, and I relied heavily on the help of family members during the years when I was waiting to be approved for disability benefits. The state I live in also cut my benefits for two years unlawfully for no good reason. I came across a lawyer, who happened to have lived with JIA throughout his childhood and went into remission in his teens, who helped get my benefits reinstated.
I knew that if all areas of my life were being affected by arthritis, there must be others out there in the same boat. Due to this and the lack of tangible resources that are available for people of all ages, genders, socioeconomic backgrounds and so on, that live with arthritis I decided to create something I wish I had at my disposal. Not only in a doctors waiting room, but on my bookshelf at home. Thus the book, Keeping It Real with Arthritis: Stories from Around the World was born. I took it from an idea and made it into reality to help people in the arthritis community, raise awareness and educate.
It features over 100 personal stories written by passionate and inspiring individuals living with arthritis, and their supporters; parents, carers, and medical professionals from all around the world. Ranging from heartfelt, hopeful, motivating, and empowering, to heart-wrenchingly eye-opening, these stories shine a light on the realities of everyday life with arthritis and related conditions. Readers will get a first-hand look at the good, the bad, and everything in between, from those who are experts in lived experience and clinical matters. This book is not only a collective effort to raise awareness that arthritis is more than just a disorder that affects the joints and highlights that people of all ages can get arthritis - most importantly, it explains there are hundreds of different forms of arthritis that impact all areas of life in profound ways, from physical limitations, mental health, social lives, relationships, faith and spirituality, finances, and work and career life balance.
Effie Koliopoulos launched her blog Rising Above rheumatoid arthritis in 2017. This would be the beginning of many ideas to shine a light on life with arthritis, both independently and collectively. She was awarded the WEGO Health Rookie of the Year Award and is a recipient of the HealtheVoices Impact Fund which has helped fund her recent book project, Keeping It Real with Arthritis: Stories from Around the World. Her advocacy efforts can be found on AiArthritis, Creaky Joints, RheumatoidArthritis.net, NewLifeOutlook, Everyday Health, Healthline, and Good Housekeeping. Aside from everything arthritis and advocacy, she is a passionate storyteller at heart. Effie is currently working on children’s picture books and other writing projects. She is a graduate of DePaul University and lives in Chicago.
Keeping It Real with Arthritis: Stories from Around the World book is available on Amazon, Barnes and Noble, Goodreads, and ImagineWe Publishers.
Learn more about the book here:
* Although Effie was diagnosed when she was 18 years old, her symptoms began before her 16th birthday - that is why her diagnosis is Juvenile Idiopathic Arthritis. You can find out more about Juvenile Idiopathic Arthritis here.
If you are concerned that a child or young person may have JIA and would like to know more, please visit www.thinkJIA.org
Keeping It Real With Arthritis: Effie's idea for the book came from her blog and Instagram.