Living with multiple chronic illnesses has taught me that each year has its ups and downs. While the downs can force me into a dark place, the ups are something I make a point to focus on to bring myself out of that darkness.
Focusing on what I can do, rather than what I can’t, is important to me because living with rheumatoid arthritis and depression, I struggle to do many things. I was originally placed on disability at 29 when diagnosed with rheumatoid arthritis. While my body needed rest at first, over the years I have taught myself how to work with my chronic illness and found something I am extremely passionate about. 2025 marks ten years since my RA diagnosis, and I have come a long way through many struggles. I wish the girl who was diagnosed with RA in early 2015 knew what would happen along her journey.
I started my advocacy journey in 2017, and now eight years later, I am still incredibly passionate about advocacy and hungry to do more.
My Personal Health
In the beginning of 2024 I started another biologic Rituximab which seems to be working slightly better than Rinvoq but not much difference at the same time. At this moment I am eagerly awaiting my next Rituximab infusion for next month.
In 2024 I received some devastating diagnosis that explains a lot about how I have been feeling over the last few years. I was supposed to attend the annual Occupational Therapy Association conference in Halifax, Nova Scotia but for the first time my health got in the way of travel. This led to me seeking out some answers with my health and has led to some more diagnoses I am facing but have given me answers to my health.
- ADHD
- Premenstrual Dysphoric Disorder PMDD
- High Blood Pressure
I will dive further into these in a separate essay on understanding comorbidities or managing tag along conditions with rheumatoid arthritis. As of right now, I am still learning to manage and understand these myself.
My 2024 Highlights of Patient Advocacy
One of the conferences I spoke at in 2024 featured a talk by psoriatic arthritis advocate Nikita Chopra, who runs Chronic Con. Her talk “Raising Awareness With Your Story” resonated with me, particularly the idea of focusing on validation first and later moving towards impact when telling your story. Eight years into my advocacy, I see how that aligns with my journey. Initially, I sought validation to help others understand that rheumatoid arthritis is much more than joint pain and that those with invisible disabilities could be struggling regardless of visibility. I also needed validation due to the losses and hurt I experienced, losing people close to me and learning to manage this chronic condition. Advocacy was very validating for me, confirming that my experiences were real and that the issues I live with require vocal experts like myself.
While validation is still a passion of mine, I believe I have moved on to the impact stage of my advocacy. Over the years, I have tried to learn as much as possible and discovered a passion for creating resources to help others navigate life with chronic illness or understand the disease. My passions also extend to participating in research and creating content for disease awareness beyond rheumatoid arthritis.
I am excited to see what impact I can make in 2025.
Webinars
In 2024, I had the exciting opportunity to host two webinars with renowned arthritis organizations. Being asked to host these webinars by Arthritis Research Canada and The Arthritis Foundation was a tremendous honor. Through these webinars, I was able to share valuable insights and engage with a wider audience, furthering the cause of arthritis awareness and advocacy. You can view the recordings of the webinars I hosted through the links below.
Conference Attendance
Canadian Rheumatology Association (CRA) Conference
In February/March 2024, I had the opportunity to attend the Canadian Rheumatology Association (CRA) conference in Winnipeg, Manitoba. This was made possible through a sponsorship I received for my contributions on the Arthritis Research Canada patient advisory board. The CRA conference is a significant event that brings together rheumatologists, researchers, healthcare professionals, and patient advocates to discuss the latest advancements in rheumatology.
HealtheVoices
In 2024, I had the privilege of attending my sixth HealtheVoices conference hosted in New Jersey. Although my speaking proposal was not accepted this year, I saw it as a valuable learning experience and plan to refine my ideas for a stronger submission in 2025. Being selected to attend the conference as an attendee rather than a speaker allowed me to fully immerse myself in the sessions without the added pressure of presenting.
HealtheVoices holds a special place in my heart as it provides a unique platform for Patient Advocates like me to connect, share experiences, and support one another. This annual event has been instrumental in shaping my advocacy journey, offering me a sense of community and helping me heal from the challenges that chronic illness often brings into our lives. Meeting fellow Advocates who share the same passion and dedication has been incredibly inspiring and empowering.
View my 2023 presentation “ From Devastated to Patient Leader – How to Kick Ass and Take Names As a Patient Advocate” at HealtheVoices
Presentations
Autoimmune Association Community Summit
The Autoimmune Association Community Summit is an online annual gathering that brings together patients, healthcare professionals, researchers, and advocates to share knowledge, experiences, and advancements in the field of autoimmune diseases. During the summit, I had the opportunity to engage in discussions on Shared Decision Making, a collaborative process that ensures patients and healthcare providers work together to make informed decisions that align with the patient’s values and preferences. Additionally, I contributed to a chapter on this topic in an upcoming issue of an Oxford Journal, which is set to be published at an unknown date.
American College of Rheumatology Conference Washington DC
The American College of Rheumatology (ACR) Conference is a prestigious annual event that gathers rheumatologists, researchers, healthcare professionals, and organizations from around the world.
A significant milestone in my patient advocacy journey was curating and moderating a session titled “It’s Not Just Joint Pain: Demystifying Difficult Symptoms of Rheumatic Diseases Often Neglected.”
Additionally, I presented on the topic “How Does a Patient Partner Get Involved When They Do Not Have an Academic Background?” which addressed the importance of patient involvement in medical research and advocacy, even without formal academic credentials.
Another highlight of the conference was my patient perspective abstract presentation “Sweat It Out: How the Sauna Has Helped Me Cope with Rheumatoid Arthritis,” where I shared personal insights on managing symptoms through alternative therapies.
In 2024, I also served as one of the ACR’s Social Media Ambassadors for their scientific conference. This role was particularly significant as I was the first and only patient without an academic background to be given this opportunity. Through my advocacy and active participation, I aimed to bridge the gap between patients and professionals, fostering a more inclusive and understanding community.
Awareness and Media
Talk Over RA
I was involved in the Talk Over RA campaign again for the 5th year where explored more about remission with rheumatoid arthritis. You can view all my Talk Over RA content on my blog. For the Talk Over RA campaign I was featured in Chatelaine.
Other Features
- The Arthritis Society – Embracing your body: Tips for a healthier body image
- Arthritis Life Podcast – It’s Not Just Joint Pain: Let’s Talk about Sleep, Fatigue, Cognitive Dysfunction, and Mental Health with Rheumatic Disease
- Arthritis Life Podcast – What does Remission Mean to Patients? With Eileen Davidson
International Foundation of Autoimmune and Autoinflammatory arthritis
In 2024, I continued my role with The International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) as a staff member originally under the title of Community Awareness Assistant but now my role has shifted to Educational Media Assistant. AiArthritis is a global nonprofit organization dedicated to improving the lives of people living with autoimmune and autoinflammatory arthritis diseases through education, research, and patient advocacy. In my role, I create engaging content and resources to highlight 22 different autoimmune and autoinflammatory conditions, aiming to raise awareness and provide valuable information to the community. Another aspect of my role is to I work to engage the community by encouraging individuals to share their stories and experiences. One of my favorite parts of this role is when we get to be creative with social media campaigns for awareness dates.
volunteering and Support
Support Groups
My arthritis support group The Arthritis Social Hour continued and will continue throughout 2025.
In 2024 I started doing Arthritis Connections, an online support session hosted by The Arthritis Society.
On the topic of support groups I spoke at the online Canadian Arthritis Research Conference Research Presentation Days in March – My topic was “What You Can’t Get From A Doctor – Exploring the Benefits of Support Groups for Adults with Arthritis”
This was similar to my patient perspective abstract for the 2023 American College of Rheumatology conference. You Can’t Get This from a Doctor: The Role of Support Groups for Adults Aged 25-55 Living with Arthritis
HealthCentral also did a feature about my support group.
Advocacy and Creativity
I started Making Shirts again with a percentage of profits going to Arthritis Research Canada. My shop needs a lot of work still though. I really do love getting lost in the creativity of design though. In 2025 I will continue to grow this project of mine.
CreakyJoints Publications of 2024
In 2024, I wrote 100 personal essays about living with rheumatoid arthritis for CreakyJoints, an online community offering support and resources for arthritis patients and their families. Each essay explored the challenges and triumphs of managing chronic illness. By sharing my experiences, I aimed to provide comfort and insight to others facing similar journeys, while contributing to the broader conversation about rheumatic diseases
My Areas of Focus For 2025
I’ve submitted a number of applications for speaking opportunities at The 2025 American College of Rheumatology conference, plans to submit a session for HealtheVoices and even applied for a grant to hopefully get into video podcasting.
My goals are to improve my health by increasing my focus on self management, create more content outside of what I normally create, grow my skills and continue to make an impact where I can.