September is Canadian Arthritis Awareness Month and this month we are honoring people living with arthritis by talking to them about what it’s really like to live with this chronic condition and why speaking up is so important for spreading awareness, stopping stigma, and gaining support. Arthritis affects around 6 million Canadians — and it doesn’t discriminate based on age or gender.
We recently spoke with the Global Healthy Living Foundation’s Canadian Arthritis Patient Council about the importance of being an arthritis patient advocate, advice they wanted to share with other people living with arthritis, and things they wish others knew about living with arthritis. Here we share their insights:
Meet J.G. Chayko
Tell us about yourself.
I am an actress, writer, former dancer, and arthritis advocate living on the west coast in Vancouver B.C. I have been writing and performing since I was 5 years old. I was diagnosed with rheumatoid arthritis (RA) in my 30s but that did not stop me from continuing to pursue my passions — both onstage and on the page. When I was 48, I went back to university and graduated from the Writers Studio. I am currently working on three novels alongside several other writing projects. You can check out my work at: jgchayko.com.
What brought you to advocacy?
I call myself the accidental advocate — I did not set out to be an arthritis advocate. I used writing as a way to inspire myself and figure out how to preserve and live my best life in the face of a new condition. In doing so, I found a community. RA is a misunderstood and complicated disease, and by sharing my story, I hope it inspires others with RA to find their best life.
What advice would you give other patients living with arthritis?
Be patient. It takes time to adjust to living with a chronic illness and to find the right treatment. Be kind to yourself; don’t be afraid to take care of you first. Ask questions, stay connected to your health care team, and seek out communities that can help support you. Find joy in the little things — this is the most powerful medicine. RA is life-changing, but it is not the end of life. I saw RA as an opportunity to step outside my comfort zone and recreate a new lifestyle that allowed me to keep doing what I love.
If there were three things you could share with someone not familiar with arthritis what would they be?
- The way I look is not always the way I feel.
- When I say no, I’m doing it for me, not you.
- I’m still me — this disease does not define me or change who I am.
Meet Michael Kuluva
Tell us about yourself.
I am a fashion designer and a rheumatoid arthritis patient plus advocate. I live in both Canada and the United States. I work very hard to bring awareness to arthritis through different mediums including art, social media, and public events.
What brought you to advocacy?
I wanted to bring arthritis awareness to more people, especially a younger demographic as this disease does not discriminate on age. I really wanted other young arthritis patients to get involved and to use their voice for the community. Advocacy is very important to me as there are still stigmas in Canada around arthritis, and I also wanted to bring further awareness on how to deal with arthritis on a daily basis.
What advice would you give other patients living with arthritis?
Get involved! Our arthritis community is growing quickly and we love to have more of you involved with our advocacy groups and our online discussions to bring more diversity to topics surrounding arthritis.
If there were three things you could share with someone not familiar with arthritis what would they be?
- You can live a long amazing full life with arthritis; it is not a death sentence.
- Even though you cannot see our disease, please do not discredit our pain or symptoms we go through every day as they usually cannot be seen.
- Be compassionate for those who are struggling with this disease, especially if they are newly diagnosed as they are still navigating through.
Meet Lene Andersen
Tell us about yourself.
I am a writer, health, and disability advocate and photographer living in Toronto, Canada. Born and raised in Denmark (my name is pronounced Lena), I’ve had juvenile arthritis since I was 4 years old and have used a power wheelchair since my teens. I have a master’s degree in social work and use the combination of my personal and professional experience to inform my writing about living well with RA, chronic illness, and disability. I share my home with a few cats and too many books.
What brought you to advocacy?
I’ve always believed that we have a responsibility to leave the world a better place than we found it. To me, that means using my experience and skills to shine a light on issues that don’t get a lot of attention. Having a disability and chronic illness means I experience the impact of ableism and lack of awareness on an almost daily basis. I am committed to do my part to create a more inclusive Canada.
What advice would you give other patients living with arthritis?
My biggest piece of advice to anyone living with arthritis is to remember that you are the expert in how this condition affects your life. Creating a better life with arthritis means having a team to support you, consisting of doctors, physiotherapists, occupational therapists, and mental health professionals — and you are the leader of that team.
If there were three things you could share with someone not familiar with arthritis what would they be?
- Arthritis is unpredictable. Never knowing how you’ll feel tomorrow makes it difficult to make plans.
- Believe people when they say they are in pain. You may not be able to see it, but it is very real.
- There is more than one way to do pretty much anything. Be flexible and ask people about their accessibility needs.
Meet Therese Lane
Tell us about yourself.
I am a person who lives with chronic pain due to having a number of conditions associated with arthritis. I find relief from exercise and living in the solution, not the problem. I am a member of the Canadian Arthritis Pain Alliance (CAPA), the Chronic Pain Network, PEPR, the SPOR Evidence Alliance, and the EDI Committee of the Canadian Pain Society. I felt that getting involved in research as a PWLE (people with lived experience) has helped me understand the impact having a chronic illness has had on my outlook of life.
What brought you to advocacy?
I have found that there are many gaps in our health care system and that there are large groups of people who aren’t getting the care and treatment they need and deserve for many reasons, including poverty, stigmatization, and lack of self-worth. I wanted to raise awareness of that, work toward a solution, and be a voice for someone who couldn’t use theirs.
What advice would you give other patients living with arthritis?
If I have only learned one thing about living with arthritis it is to keep moving. Physical activity helps with the physical, emotional, and mental aspects of this disease.
If there was one thing you could share with someone not familiar with arthritis what would it be?
Arthritis doesn’t discriminate; it can happen at any stage of your life.
Meet Cristina Montoya
Tell us about yourself.
At 22 years old, I was diagnosed with rheumatoid arthritis, Sjögren’s and fibromyalgia in Colombia. As a registered dietitian, I empower women with Sjögren’s and other rheumatic diseases to adopt a holistic and unrestricted anti-inflammatory lifestyle.
What brought you to advocacy?
Rheumatoid arthritis deformed my joints, and Sjögren’s significantly impacted my quality of life. Sjögren’s was the main reason I became an “accidental” advocate. Despite the growing understanding of Sjögren’s, patients feel isolated, underdiagnosed, and ignored. Sharing my story and positive ways to cope with this disease allows me to connect with other patients and inspire a sense of belonging. I strive to educate other health care providers so they can tell Sjögren’s warriors, “I believe you,” and provide them with the interdisciplinary and quality care they deserve.
What advice would you give other patients living with arthritis?
Living with inflammatory arthritis is a marathon, not a sprint. Early detection and treatment of rheumatoid arthritis is the best way to slow the progression of the disease and improve your quality of life. Diet does not cure arthritis. However, lifestyle changes such as balanced nutrition, physical activity, stress management, quality sleep, and setting healthy boundaries can help improve your overall health and quality of life.
If there were three things you could share with someone not familiar with arthritis what would they be?
- Arthritis is more than joint pain. It does not discriminate. Children, young people, and men also get arthritis.
- Not all disabilities are visible. People living with arthritis can experience severe fatigue and chronic pain. They need your empathy and support as much as someone living with cancer.
- If you know someone with arthritis, don’t dismiss it or provide unsolicited advice. Listen and offer genuine help, for example, “I can watch your kids for two hours while you rest.” It takes a village to survive and thrive with arthritis.
Meet Eileen Davidson
Tell us about yourself.
I’m a mother from Vancouver, Canada, and I was diagnosed with rheumatoid arthritis at age 29. Since my diagnosis I have become a patient advocate, writer, and partner in health research. Arthritis turned my world upside down, but advocacy is my way to fight back.
What brought you to advocacy?
Given the stigmas and misconceptions surrounding living with arthritis and because arthritis is often an invisible illness, I felt frustrated at the time of my diagnosis as I kept hearing I was too young for arthritis and that arthritis isn’t a serious disease, which is very far from the truth. Arthritis is a serious disease that is the number-one cause of long-term disability in Canada. Advocacy is important to me because arthritis has a devastating impact on the Canadian population and through advocacy there is a way to reduce that burden. Advocacy promotes quicker diagnosis, better effective treatments, understanding and support from others, and life-changing research.
What advice would you give other patients living with arthritis?
My advice to others with arthritis in Canada is to educate themselves the best they can about their conditions through reputable resources. It’s important to learn what works best for you when it comes to self-management of your disease, and to keep educating others about the toll of arthritis as it helps promote quicker diagnosis for others.
If there was one thing you could share with someone not familiar with arthritis what would it be?
Arthritis is not just an older person disease. It is not just joint pain but, in fact, a very serious condition with more than 200 forms that can impact different parts of the body, including the heart, kidneys, immune system, and lungs.
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