The Write Stuff – Overcoming your Arthritis Diagnosis

The Write Stuff – Overcoming your Arthritis Diagnosis

Author and activist, Effie Koliopoulos, shares her journey with juvenile arthritis (JA) and how she found strength in her writing. Fifteen years ago, right before starting her senior year of high school, she was diagnosed with polyarticular juvenile idiopathic arthritis which was confirmed when she received a second opinion at the Mayo Clinic. This form of JA, in which the body’s immune system attacks its own cells, results in pain, swelling and stiffness of the joints. Patients may also experience fever, swollen lymph nodes and a rash. For some patients, the disease is transitory, unfortunately for, like Effie, it persists and can cause lifelong symptoms to be experienced. Serious complications, such as growth problems, joint damage and eye inflammation may occur with JA. Treatment tends to concentrate on controlling pain and inflammation, improving function, and preventing joint damage.

“I lived life before diagnosis and I was adamant to continue that trend after I was diagnosed.” 

Rising Above

Choosing to not be defined by your diagnosis is brave and encouraging to other patients. This does of course not mean the journey is easy. Effie admits that in the beginning, during her worst moments, she wasn’t sure how she was going to carve out a life she still enjoyed given her diagnosis and the pain and limitations associated with it. It was necessary to grieve the healthy life she had lost. Effie has had her fair share of the ups and downs that come with chronic illness. The moments of uncertainty, the flare ups, pain, sleepless nights and medications that stopped working were catalysts that spurred investigations into root causes and targeted treatment plans that would hopefully lead to a decrease in inflammatory markers. “Deep down I always knew I would heal eventually and overcome my obstacles even if that meant seeking out multiple physical therapists and doctors who matched my exact vision. Finding a team who believes in you as much as you believe in yourself is very important. Otherwise you will be surrounded by people telling you, you can’t achieve this or that, when you actually can at times.”

With a strong sense of self belief Effie has developed numerous coping mechanisms throughout her journey with JA, many of which learned during her most challenging moments. She is a big proponent of not feeling guilty when it is necessary to take time out due to your condition, giving yourself the space and time needed to avoid severe flare ups and burn outs. In 2012 this really hit home, a serious flare up left Effie bed ridden, it took giving up her fulltime employment and six months to recover. The impact of these conditions is so much more than just physical, there are financial and social implications as well. Despite finding a combination of medication and alternative therapies that Effie have found to work, in 2016 at the young age of 29 she had to undergo a total knee replacement. Along with her knee, her hands, wrists and elbows were the first targets of the disease. Notwithstanding the physical restrictions Effie does not use the term limitations, because she believes that these “limitations” can be worked around. “There are so many methods provided by rheumatologists, surgeons, physical therapists, occupational therapists, massage therapists, acupuncturists, to name a few professionals, that can help us rise above these limitations. Modifications and finding creative ways to doing certain things has softened the disease’s impact for me.”

Be Your Own Best Friend

As is evident in her approach to her diagnosis a key skill for Effie is being a strong advocate for yourself, not just in terms of treatment options but in terms of how you approach the hand you have been dealt.  Having to go on disability was difficult to come to terms with, this was compounded when those benefits were cut unlawfully, lack of assistance from free services saw Effie having to hire a lawyer and fight for something rightfully hers.  A judge luckily realised the error and reinstated her benefits. Unfortunately, this is not an isolated situation, it is far more common than it should be. As someone with one of the “invisible” illnesses, situations are sure to arise in which you are left having to defend yourself to those that simply have a lack of information and understanding. As a patient with JA one aspect that she feels strongly about addressing is the idea that arthritis is a disease of the elderly, she has lost count of how many times she has heard “but you are so young”. Instead of allowing the frustrations this can cause to build Effie has a unique perspective “It’s time to start conversations that really create positive change and when I find myself in those types of situations, I use that to my advantage to educate people.” In living this belief, she took the challenges she faced and started writing about her experiences, sharing them on several online and print media forums.  Her own writing was a form of catharsis, and reading other people’s stories motivated her never to give up. She channelled the inner strength and wisdom she had gained from living with JA and channelled it into her advocacy work as an arthritis patient leader. Getting to this point in her own journey was not always easy “Even though, I worked in the non-profit sector in college and did a ton for the arthritis community where I live, I wasn’t ready at the time to fully immerse myself in this world. It wasn’t until my negative experiences with insurance coverage, financial debt, disability benefits being cut, doctors who ignored my symptoms, my disease progressing rapidly and my fist ever surgery, that led to the positive changes in my life now. I really believe that turning the negatives into a positive is possible. There is always a silver-lining and reason for why things happen the way they do!”

Patiently Leading

This unfailing resilience has allowed Effie to carve out a life she can be proud of. Currently, she is a free-lance writer for NewLifeOutlook where she writes about RA related-topics. She also serves on the Patient Leader Advisory Board for WEGO Health and is an ambassador for other charities such as, InvisiYouth and Suffering the Silence. Her own website, rise above rheumatoid arthritis, launched in 2017 is an accumulation of all her hard work, perseverance and experiences. It provides a platform from which other patients can learn, draw inspiration and share. Her immediate goal is to complete her first children’s book. The book is for those who are living with JA, RA, chronic illness or disability as well as their family, friends and supporters because the overall lessons, morals and themes can be universally applied by all and enjoyed by both parents and children alike.  These core beliefs were why Effie was drawn to ANRF. “This organization while being patient-oriented, building a community and platform to connect and share our stories, focuses on a crucial issue that is too often neglected – research. There are still so many answers left to discover and bringing that out into the world is what is needed to create a positive change in people’s lives who continue to suffer daily. Researchers and scientists are the backbone to why many of us are thriving at present time. If it wasn’t for their God-given gift to find solutions and medical therapies to help with the progression of the disease and symptoms, many of us may not be here right now- myself included.”

ANRF is continuously inspired by the patients they come into contact with. It reaffirms the foundation’s goals and is a reminder of why research and education are of paramount importance. To learn more about Effie’s progress and to connect with others you can follow her website (https://risingabovera.com/) and join her mailing list for access to her upcoming book (https://iameffiek.com/). 


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ANRF
Article Author
Arthritis National Research Foundation
arthritisresearch@curearthritis.org

The Arthritis National Research Foundation's mission is to provide initial research funding to brilliant, investigative scientists with new ideas to cure arthritis and related autoimmune diseases. Writing articles about the patients affected and the science being done to find a cure shows why we need to come together to #CureArthritis!

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