Being Diagnosed with Rheumatoid Arthritis in an Era Where Social Media Didn’t Exist
Last updated: April 2022
One thing I wish I had back 17 years ago when I was diagnosed with rheumatoid arthritis was more resources. Informational pamphlets at a doctor’s office or magazines that featured only a couple of stories from a certain demographic made me more anxious.
I wanted to read stories of people who were my age, but most importantly of people from all over the country and world, who kept it real by sharing all aspects of the journey - good, bad, and in between.
Google, Yahoo, blogs, and online forums
These 4 mediums were my rheumatoid arthritis sidekicks. When I was diagnosed in 2005, Facebook was only reserved for people attending prestigious universities. I was about to graduate high school, and this wasn’t made available until about 2 years later.
Even so, there were barely any rheumatoid arthritis support groups, pages, or anything dedicated to life with chronic illness. During those beginning years, I was a mere spectator, silently reading blogs and connecting with others on online forums mainly through Google and Yahoo.
Google and Yahoo search engines suddenly became my medical team, though I found out relatively quickly that looking up your symptoms on the worldwide web was a bad idea. But, that is essentially how I found out that what I was experiencing was indeed an autoimmune and autoinflammatory form of arthritis.
So, even though these parts of the web weren’t places I should search for answers, I still had respect for them. Why? Because they were the only things that didn’t medically gaslight me or tell me I was "too young for arthritis." It listened and confirmed what my intuition was telling me - these 2 simple but profound actions doctors never did for me in the few years I was suffering in silence with mysterious symptoms.
Going from a few sidekicks to overwhelming amounts of online noise
Sometimes the saying, "Be careful what you wish for," is true. There is a ton of information at our disposal now that it often feels like a blessing and a curse. Not everything we see on social media is good for our mental and emotional wellbeing. Some content may be triggering, leading us down a deeper rabbit hole.
When I got back into arthritis advocacy in 2016 after an 8-year hiatus, I was ecstatic to learn there was this whole arthritis community out there. I probably would have found this out sooner, but in those years leading up to then, my rheumatoid arthritis was relatively controlled. I was enjoying life and didn’t feel the need to connect with others. But also, a big part of me wasn’t ready. Being diagnosed with a chronic illness is a traumatic experience.
I missed out on a lot of things as a teen, so the last thing I wanted to do was talk about it. Though that’s the thing: not talking about it was affecting me. For a while, I felt scared to share my story. What would people think? How would it be perceived? Would anyone even feel the same? But the second thing I quickly learned is that not only talking but writing about it was a therapeutic outlet for me.
After a negative turn of events that brought me down a path of major flares, more irreversible joint damage, and a knee replacement, I felt compelled to share my truth. Doing this not only helped me but others as well. This led me to create multiple collaborative projects for people in the arthritis community. My arthritis advocacy work has always focused more on the collective voice than just only my own.
Finding that happy medium
Last year, something refreshing sort of happened. Social media went down for about a day or 2. Many including myself, felt a sense of relief. It forced us to break away from the social media world for a bit and entertain the real world though, nowadays, the emergence of multiple social media platforms has provided an unmatched sense of comradery within the arthritis community.
But what if social media one-day shifts gears or completely disappears? While that is unluckily to happen, it still sparked an idea to create something more tangible and long-lasting for not only people of today, but generations to come.
A vision to share real stories of life with arthritis
I will be putting a nonfiction book of short stories together featuring perspectives of individuals living with all types of arthritis, and those that support us i.e., family members, spouses, friends, and health care providers such as rheumatologists. This is open to anyone, in all parts of the world.
The mission is to feature 100 or more diverse short stories of those affected by arthritis directly or indirectly. Arthritis doesn’t only impact people living with arthritis, but those in their lives as well. The vision is to share real stories of life with arthritis and shine a light on who the person is despite arthritis. Each story will fall into a specific theme, and these themes will represent the areas of life that arthritis impacts. The value is that this book can be a resource for not only people living with arthritis, but loved ones, providers, future generations to come, and anyone else interested in learning more about arthritis.
This was something I wish I had when I was diagnosed. Sometimes what we wish for brings us ideas to create much-needed change for the greater good. This book will be the first of its kind for the arthritis community.
How to participate
To submit your short story and photo or to learn more about the book visit the submission page at Keeping It Real with Arthritis Stories. You can also find out more details over on my YouTube channel here: RA and Myself.
The deadline to submit is by Tuesday, June 7th, 2022 at 11:59 pm ET.
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