Three years ago today, I typed my first blog post in my back yard on a whim. My daughter had started to blog – what’s to worry about – just do it! Before that, I’d been working on ideas for months. I did have a goal: to build a website where RA patients could find reliable information and have a safe environment to ask questions and support each other. Pretty simple stuff, right?
- While I did dream of building a comprehensive website for RA, I had no idea the impact it could make.
- Or how much hard work would be involved.
- At first, I thought that I was mostly alone; I supposed that most people with RA fit textbook examples, responded well to treatments, and usually received appropriate medical care.
The biggest thing I learned was that I was not alone. It took a year to convince me it was safe enough to write my swelling confession. Since then, I’ve realized a majority of patients do not fit the “typical” RA in books. Tens of thousands of comments tell the story.
Here are 5 stunning things I discovered
1) There is a great divide in rheumatology understanding with regard to various symptoms, especially conspicuous swelling. Too many doctors are not aware of current research or treatment recommendations. There is a stark contrast between the levels of quality of rheumatology care patients receive. A standard of care is needed.
2) Most descriptions of “typical” RA presentation are inaccurate and inadequate.
3) Academic credence is given, by some, to a belief that the severity of RA pain is exaggerated. Medieval theories about women and anger are reincarnated, impeding progress, and using modern words such as hypochondriasis.
4) Highly specialized research is revealing what Rheumatoid disease often entails (such as lung involvement). However, people who live with RA are the only ones with full comprehension of its symptoms. The patient voice is urgently needed and perilously absent in the educational, legislative, research, and industry arenas.
5) Most people who live with RA are the bravest, most optimistic people in the world. People who care for them are a close second.
I’d like to meet & thank every one of the millions of visitors to the site.
Who knew I’d make friends like the phenomenal Kevin Purcell, rockstar mentor Dave deBronkart, Mayo Clinic’s extraordinary John Davis, the fearless yet gracious Donna Cryer, and meet sisters like Barbara, Nancy, Dana, Shannon, Karaleigh, Jamie, Jenny, Carol, Kim, Vi, Steph, Connie and brothers like Trey, David, Randy, Bob, Jay, Jason, and so many more… and my Twitter #rheum-mates, my Facebook family and MD’s who seek patients’ best interests, especially Lothar Kirsch and Shashank Akerkar, Carlos Caballero, Paul Sufka, and Ronan Kavanagh!
While we have 15,000 fans on Facebook, 40,000 views on YouTube, over 18,000 comments, almost 1500 completed our 1st survey… numbers can’t really tell the story. PATIENTS tell the story in their comments, blog posts, and letters searching for needed help and support and sharing it with others.
This winter, I received the WebMD Health Hero of the year award for working with patients. This week, I was chosen by Sharecare as the top online influencer in the world of Rheumatoid Arthritis for working with patients. Last month, I finally created a Press tab to collect all that info that I’d lost track of.
Forecasting the future for Rheumatoid patients
I used to make lists, but I mostly gave that up because with RA, it became too discouraging. Even so, it haunts me the dozens of posts partially written and the dozens of projects not yet completed. But when I pry myself away from that, I look forward – and I see a different future.
From my unique vantage point, I see a future in which…
- Doctors are aware enough of Rheumatoid disease that people are promptly diagnosed
- Disease treatment options are applied or adjusted without delay
- Symptoms are treated instead of dismissed, doubted, or debated
- Research dollars reflect the severity of the disease and the millions affected
- Patients are not told by loved ones to forgo treatment for cherry juice, raisins, or jogging
- RA awareness brings appropriate accommodations / assistance when patients CAN’T do things
“I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I —
I took the one less travelled by,
And that has made all the difference.”
From The Road Not Taken (1916) by Robert Frost
- List of posts about Patient Reported Outcome Measures
- Blog’s 1st birthday: History of Rheumatoid Arthritis Warrior Blog
- Blog’s 2nd birthday: Elephant Jokes for a Happy Two Year Birthday RA Warrior
- I’m Not All Better, Just Too Polite to Whine; Yet Victory Is Still Sweet
- My actual birthday: My Birthday Cards to Make You Smile