Rheumatoid Arthritis Patient Advocate and Writer
Being diagnosed at age 29 with rheumatoid arthritis opened my eyes to the challenges of living with a serious autoimmune disease. At the time of my diagnosis, I wasn’t even aware arthritis involved autoimmune forms, was as serious as it is, and someone as young as me could be struck with it. Since then, I’ve discovered living with arthritis can often feel overwhelming.
These are some of the questions that I’ve had to deal with
- How do I manage these debilitating symptoms of pain, fatigue, cognitive dysfunction, and malaise?
- How do I navigate life and the medical system with a bumpy chronic illness?
- How do I know what advice to listen to when so much is out there, often contradicting each other or very expensive and sometimes dangerous advice?
- How do I get to learn more that will truly benefit my arthritis? Unfortunately, doctor appointments are often short and focus only on medications or referrals.
- How do I connect with people who really get what I’m going through?
For me, the answer to better self-management and understanding of my disease started when I began participating in health research in 2018 by joining the Arthritis Research Canada patient advisory board.
Participating in research to connect with people living with arthritis
Not everyone understands what living with an invisible illness is like, especially arthritis, which comes with many misconceptions and stigmas. During my involvement with arthritis research, I’ve learned not only from research but also from people with lived experience dealing with arthritis. Connecting with people who understand the illness helped me feel less alone in my invisible struggles.
Volunteering for a sense of purpose and hope
Volunteering has helped me tremendously counterattack the depression that comes with living with this disease. Arthritis is the number 1 cause of longer-term disability in Canada. So, when I was placed on disability from the disease, I needed to find an outlet that made me feel a sense of purpose while giving back to my community, helping others like me, and hoping for a better future with arthritis.
Connecting with world-class clinicians and researchers
After joining the patient advisory board, I partnered with researchers and experts who focus on topics most important to people like me living with arthritis. For example, I was able to participate in studies to understand how exercise and monitoring my symptoms with a Fitbit would impact my RA. These studies gave me access to physiotherapists and kinesiologists with an interest in arthritis, who helped answer my questions and concerns about specific barriers I face with RA and exercise.
Self-management skills essential to living with arthritis
Chronic illness is bumpy; medications only go so far. Exercise has been one of my primary self-management skills in navigating life with arthritis. Thanks to participating in research, I feel much more confident in my ability to exercise safely and without exacerbating my symptoms. Exercise has helped reduce my symptoms and get stronger with RA.
Deeper understanding of symptom management
Through research, I’ve learned that movement is important for pain reduction, when before I thought it would be best to just rest. Understanding all the symptoms associated with arthritis has helped me know which self-management strategies to try to find relief, if they don’t work and persist, I know it is time to bring this up to my doctor.
Increased understanding of arthritis and improved communication with doctors
RA is so much more than joint pain, so learning to tackle and understand symptoms like brain fog, fatigue, sleep issues, mental health, or comorbidities common with RA is crucial to living well with the disease. Participating in research has taught me what a lot of medical terms mean and what to watch out for with my diagnosis. As a result, I can have much easier conversations with my health-care professionals knowing what questions to ask and what their answers mean.
Because of arthritis research, I feel more confident in living well with rheumatoid arthritis.