Reflecting on when someone told me no one would care nor listen when I started to speak up about arthritis.
When I think back to when I first became a patient advocate, before I even knew what the exact name for what I was doing, I was terrified no one would listen, people would assume it’s all in my head or I am faking it. I can remember my roommate at the time when I just sparked interest in advocating arthritis told me no one would listen, no one would care. Those words stuck with me for awhile. He had some truth to what he said, there are those who seem to get uncomfortable when I speak up about my health struggles and those who look the other way from me when I reveal all that is wrong with me. If I could go back to that time and tell myself that in 2020, one of the most difficult years I managed to thrive with my advocacy in ways I never imagined I don’t know if I would have believed you.
I realize now a lot of those emotions came from living with an invisible illness and years of people dismissing my health concerns because I was young and looked healthy in their minds. Now I know advocacy has helped heal me somewhat after the grief of being diagnosed with a chronic illness. I have gained confidence, determination, and so much knowledge since I set forth on this journey. Every opportunity I get to participate as a patient advocate I get to learn so much and grow with my community.
A review of some of my biggest highlights during a difficult year.
April 2020 marked my one year writing for Creaky Joints but in 2020 I wrote or contributed to a total of 27 posts. I am grateful for the platform to express myself and relay information I learn as an advocate and my rheumatoid arthritis journey to a larger community.
- What Does Rheumatoid Arthritis Really Feel Like? The 10 Descriptions You Won’t Read in an Office Pamphlet
- How I Explain Chronic Fatigue to Those Who Don’t Have It
- Brain Fog: Why Don’t We Talk More About This Frustrating Symptom of Rheumatoid Arthritis?
- The Frustrations of Living with an Invisible Disability like Rheumatoid Arthritis
- How a Sneaky Copper Deficiency Landed Me in the ER
- How You Can Support Someone with a Chronic Illness (and Some Real Advice on How *Not* To)
- Here’s What It’s Like to Be an Immunocompromised Rheumatoid Arthritis Patient in the Time of Coronavirus
- A Plea to the World from an Immunosuppressed Single Mom to Flatten the Coronavirus Curve
- Here’s How I’m Adjusting My Rheumatoid Arthritis Self-Care Routine for Coronavirus — and It’s Not Easy
- A Thank-You Letter to the True Heroes of the Coronavirus Pandemic, from a Worried Rheumatoid Arthritis Patient
- Parenting During Coronavirus Is Not Easy, Especially as an Immunosuppressed Single Mom
- The 9 Emotions I Keep Struggling with During the Coronavirus Pandemic (and How I’m Dealing)
- World Arthritis Day ‘COVID-19 Time Capsule’ with Eileen from Canada
- Social Distancing Since Before It Was Cool: What Others Can Learn from Our Chronic Illness Lifestyle
- The 13 Silver Linings I Found in the Coronavirus Pandemic as Someone with Chronic Illness
- Keeping My Son Home From School This Fall Is a No-Brainer Choice, Says One Mom with Chronic Illness — But It Still Breaks My Heart
- The Bizarre Emotions of Dating When You Are 33 and Have Rheumatoid Arthritis
- The Sneaky Perks To Dating Someone With Rheumatoid Arthritis
- I’m Turning 34 But My Rheumatoid Arthritis Makes Me Feel Like I’m 87
- Here’s Why I Stopped Making New Year’s Resolutions After Having Rheumatoid Arthritis
- I Was Scared of Strength Training Because of My Rheumatoid Arthritis. Here’s How I Got Over It.
- I Am Not a Burden Because of My Chronic Illness (Even Though Dating Makes Me Feel Like I Am)
- How I Finally Found Courage in My Rheumatoid Arthritis Diagnosis
- Chronic Pain and Suicide: Signs You or a Loved One Needs Help, and How to Get It
- Your Period, Menstrual Cycle, and Inflammatory Arthritis Flares: What’s the Connection?
- 12 Tips to Take the Guilt Out of Parenting with Chronic Illness (from a Single Mom with Rheumatoid Arthritis)
Features, Nominations and Awards:
- Women’s Health – ‘After My Rheumatoid Arthritis Diagnosis, I Got Into The Best Shape Of My Life’
- Women’s Health – Why It’s So Crucial to Stay Active with Rheumatoid Arthritis
- CNN – They’re living with an invisible illness. Social distancing will save their lives
- Chatelaine – Rheumatoid Arthritis: Don’t Tough It Out, Rein It In
- Nominated 2020 WEGO Health Awards
- Nominated 2020 Courage to Comeback Awards
- Mary Pack Volunteer Award by The Arthritis Society
- Everyday Health – 10 Arthritis Blogs to Watch in 2020
- Healthline – Best Rheumatoid Arthritis Blogs of 2020
- Pain BC Patient Advocacy Spotlight
- CIHR-IMHA-PERA Newsletter – Celebrating Champions – How Social Media Influencers Can Promote Patient Engagement in Health Research
Partnerships
TalkOverRA Campaign to help patients have a better conversation with their rheumatologist to achieve their personal goals.
- Rheumatoid Arthritis: Don’t Tough It Out, Rein It In – Chatelaine
- #TalkOverRA – Why It’s Important To Advocate For Yourself
- #TalkOverRA – When Should You See Your Rheumatologist
- #TalkOverRA -The Mission is to Achieve Remission, But What is Remission?
- Rheumatoid Arthritis? Healthline Has A New App For That!
- How Technology Helps the Rheumatoid Arthritis Community
- How a Fitness Tracker Helped Me Understand and Manage My Rheumatoid Arthritis Symptoms
- The Truth About Rheumatoid Arthritis: 7 Things I Wish People Understood About My Chronic Illness
Research Participation Highlights
- The Benefits I Discovered Monitoring My Rheumatoid Arthritis – And How You Can Too
- I Was Scared of Strength Training Because of My Rheumatoid Arthritis. Here’s How I Got Over It.
- Insights on mental health when living with rheumatoid arthritis: a descriptive qualitative study of threads on the Reddit website
- It’s Okay to not be Okay – Speaking up about Arthritis and Mental Health
- Arthritis Research Education Series: Mental Health and Arthritis
- 30-Day Exercise Challenge for Arthritis
- American College of Rheumatology Conference 2020 – #ACR20 – What A Year – A Rheumatoid Arthritis Patient Reports on The Virtual Event
- Canadian Arthritis Research Conference and Canadian Rheumatology Conference – A New Decade in Arthritis Research – What I Learned as a Patient Attending Canada’s 2020 Scientific Meeting
Took My Advocacy to a Higher Level
Doctors of BC Shared Care Chronic Pain Committee
I was invited by Pain BC to join a provincial advocacy board for people living with chronic pain. Shared Care Committee invited interested physicians, members of the Divisions of Family Practice as well as representatives from the Ministry of Health and Pain BC, to meet to discuss emerging themes and opportunities to leverage learnings on the subject of Chronic Pain.
Canadian Institutes of Health Research – Institute of Musculoskeletal Health and Arthritis – Patient Engagement Research Ambassador (CIHR-IMHA-PERA)
PERA represents the patient-oriented research (POR) mandate of CIHR-IMHA, leading efforts to ensure patient oriented research principles are incorporated in relevant IMHA activities and funding opportunities.
