« Si nous voulons que la polyarthrite rhumatoïde soit plus visible et mieux prise en compte dans les décisions concernant les politiques et le financement de la recherche au Canada, nous devons nous exprimer sur notre situation en tant que Canadiens. »
“If we want rheumatoid arthritis to be more visible in this country, more considered in decisions regarding research funding and policy changes, we need to speak up as Canadians about our situation in Canada.”
Des membres du Canadian Arthritis Patient Council de la Global Healthy Living Foundation s’expriment sur ce que c’est que de vivre avec l’arthrite et sur ce qu’ils aimeraient faire connaître de cette maladie chronique.
Members of the Global Healthy Living Foundation’s Canadian Arthritis Patient Council weigh in on what it’s like to live with arthritis and what they wish others knew about this chronic illness.
J. G. Chayko rentre chez elle en toute sécurité, mais confrontée au décalage horaire et au temps plus froid. Elle a aussi rapporté avec elle une énergie renouvelée pour maintenir un équilibre travail/vie personnelle sain.
J.G. Chayko makes it home safely and is now faced with jet lag, colder weather, and a renewed energy to keep a healthy work/life balance.
« Pour faire face à la douleur causée par la polyarthrite rhumatoïde, il faut une boîte à outils pleine de trucs et de remèdes différents. En plus des outils habituels, comme les médicaments, les sacs magiques, les blocs réfrigérants et les étirements doux, la mienne comprend également sacrer comme un charretier. Ça pourrait fonctionner pour vous aussi. »
“Coping with RA pain takes a toolbox of many different remedies and trips. In addition to the standards, such as medication, heating pads, ice packs, and careful stretching, mine also includes swearing like a sailor. It might work for you, too.”
J.G. Chayko isn’t leaving her rheumatoid arthritis management behind during this trip. Here, she talks about the importance of sun protection, hydration, yoga, pacing, medication management, and more.
"The focus needs to change from deciding patients catastrophize to taking responsibility for helping them develop effective coping tools.”
J.G. Chayko took a big leap and decided to travel abroad during the pandemic. Here are the pre-travel and travel precautions she and her husband took to stay safe.
“When I say break the rules, I simply mean to indulge in a little bit of decadent sin to detach myself from a life with chronic illness and remember what it felt like to be unbreakable for a few stolen moments.”
Learn how RA patient advocate J.G. Chayko is learning to move forward during the pandemic and face the world after a long hibernation.
Patient advocate Lene Andersen talks about how celebrating your body, asking for help, and embracing your intrinsic worth can help get you started.
Plus, four ways to start learning how to unlearn the urge and find acceptance in your own rheumatoid arthritis reality.
Patient advocate Lene Andersen talks about why and how to make issues like mask mandates, pharmacare programs, and affordable accessible housing front and center during this year’s Ontario and Québec polls.
For patient advocate Eileen Davidson, a shortage of family physicians in BC is adding to the mental and physical toll of living with chronic illnesses.
"I lost myself in my art — it took me out of myself, gave me a break from reality, and provided a new perspective on my life. It gave me a reason to celebrate, and celebrating the small victories is so important, especially in a life with chronic illness." — J.G. Chayko
“Many people in the chronic illness community are worried about the world reopening,” says RA patient and health care worker J.G. Chayko. “But I’m not as worried because I never got to hide from it in the first place.”
Whether or not your chronic illness is obvious to others can affect how you’re treated — and sometimes, how you feel about yourself.
After J.G. Chayko was diagnosed with RA, she doubted whether she’d be able to live the life she wanted. Then she realized she had to redefine what it meant to seek joy in everyday experiences.
There aren’t enough rheumatologists in Canada to provide timely care. Rheumatoid arthritis advocate Lene Andersen spoke with rheumatologist Tooba Ali, MD, on how patients and doctors can work together for a better future.
Medication fatigue was a symbol: It wasn’t really the medication that J.G. Chayko was tired of — it was living with rheumatoid arthritis, a lifelong chronic disease.
"Fatigue is a heavy, lead-lined cape that weighs down every movement so I need more energy for even simple tasks,” says Lene Andersen, rheumatoid arthritis patient advocate. Here’s how she’s learned to live with it.
For actress and dancer J.G. Chayko, working has never exactly been conventional. But she realized after her rheumatoid arthritis diagnosis that she would ultimately need to work part-time to get the health and balance she craved.
Adjusting to menopause after decades of a predictable monthly cycle was not easy for J.G. Chayko, but it turns out that managing a chronic illness like rheumatoid arthritis makes adjusting to menopause easier.
Lene Andersen learned early on that although she couldn’t control what happened to her over the course of her journey with chronic illness, she could control her reaction to it. “Back then, and now, I choose laughter,” she says.
There’s more than one way to raise awareness of invisible illnesses like arthritis, says rheumatoid arthritis patient J.G. Chayko. And it starts with acknowledging the struggles and the triumphs.
Although recreating festive traditions in exactly the way we used to may feel like a way to reclaim our lives, it just perpetuates old and dysfunctional habits. Instead, follow these tips for easier and happier holidays, says advocate Lene Andersen.
In a moment of profound insight, Lene Andersen realized that her body was not an enemy to resent, but a friend worth getting to know and supporting.
“The term patient reduces me to one a small slice of a much greater whole,” says Lene Andersen, a person with rheumatoid arthritis. “We are all so much more than just one thing and who we are is always and forever greater than the sum of our parts.”
"I miss the lights, the costumes, and the challenge of bringing the world of the playwright to life, but I’m not sure I’m ready to take the stage just yet," says Julia Chayko, a rheumatoid arthritis patient.
When rheumatoid arthritis patient and fashion designer Michael Kuluva approached Eileen Davidson to help design a T-shirt to promote arthritis awareness, she embraced her own ‘fierce fight’ to help inspire and support others.
From co-designing a shirt with a fellow rheumatoid arthritis patient to having people with chronic illness as models, designer Michael Kuluva continues to ensure his New York Fashion Week show is inclusive and raises awareness.
“Let’s allow that sense of play to fuel our well-being and ignite our imagination,” says Julia Chayko, a rheumatoid arthritis patient.
September is Arthritis Awareness Month in Canada. Here’s what rheumatoid arthritis patient Eileen Davidson has learned about using her voice to
“These new guidelines show me that, even on the bad days, I am still doing something to improve my health, easing some of the burden and guilt I feel when I skip a workout because of my illness,” says Eileen Davison, a patient advocate with rheumatoid arthritis.
You may feel helpless as you wait to meet with a specialist about your rheumatic disease, but there are steps you can take during the waiting period to prepare for your first visit with the rheumatologist.
“Shifts in the weather can happen at any time, pitching the ocean into a frenzy and churning the waves of inflammation in my body,” says Julia Chayko, a rheumatoid arthritis patient.
In Canada, the average wait time to access specialty care — like rheumatology —is 78 days. During this time, your rheumatoid arthritis may be progressing at its own speed and stopping you from living your life. Here’s what to do during the wait time to manage your pain.
“I learned that managing my disease was not just about medications and therapies, but about balance.”
“There’s something about crisis situations that allows you to shed what’s not important and prioritize what you love.”
“There’s mutual relief that comes through sharing and hearing that someone else understands exactly what you are going through.”
"I realized I had to get some answers in order to make the best choice in regard to my COVID-19 protection."
“Although yoga started as a way for me to slowly learn how to move in my new body, it quickly became more than a physical exercise.”
Getting involved in arthritis research taught patient advocate Eileen Davidson a lot more about how to live with rheumatoid arthritis than she would have learned on her own.
U.S.-born Michael Kuluva started to shine a spotlight on what it’s like to live with rheumatoid arthritis after he was diagnosed at age 28. Now he is continuing this important patient advocacy work as a resident of Ontario.
No, I can’t tell you when the weather is about to change by a feeling in my joints but I can sure tell you how the weather when frightful changes the way my joints feel.
‘People believe that they “understand chronic pain” because they have also felt pain but it's a completely different thing when it's day in and day out for years.’