My original plan was to write two separate posts about my weekend in Boston, one about the Joint Decisions Empowerment Summit, and the other about my experience at The American College of Rheumatology (ACR) conference. But I decided to combine these two things into one long post so I didn’t have one that was profoundly positive and one that was profoundly negative.
I arrived in Boston on Friday night. I had a few minutes to settle in before attending a welcome dinner for members of the Janssen Biotech and CreakyJoints teams, and the patient bloggers. It was amazing to see the friendly faces of those I have met in person before, including Hurt Blogger Britt, Inflamed Angela, Cathy Kramer of The Life and Adventures of Catepoo, and Spoonless Mama Rachelle; and new faces but definitely not strangers Carla of Carla’s Corner, Wren of Rheumablog, RA Guy, All Flared Up Amanda, Titanium Triathlete Dina Neils, and Mariah Leach of From This Point. Forward.
On Saturday, most of what we did was share our patient stories. While we all know each other via our blogs, being together in person and actually talking was incredibly powerful and uplifting. I was so lucky to be in the company of so many amazing, amazing people. We also got to hear the amazing story of Tina Wesson, best known for winning the second season of Survivor, who also has RA.
It’s events like these that uplift me, inspire me, and inject positivity, enthusiasm, and the sense of family and community in living life with RA.
Sunday, was more business than personal. We gave a lot of feedback about the Joint Decisions webinars, which was the collaborative effort of CreakyJoints and Janssen. We also had the opportunity on Sunday to go to ACR.
I have to admit that when I was told I would have the opportunity to go to ACR, I was more than a little excited. Call me a dork, but I have been wanting to attend since I first got sick.
I had high hopes for what would be in store.
I only had a few hours before my flight, but I was grateful to have the opportunity to check it out and see what it was all about.
I really only made it through the area where the pharmaceutical companies are set up. To say that they each have their own booth is an understatement. They have these visually and technologically advanced spaces that can only be described as show pieces. Most booths had plush carpet and elaborate little cafes and sitting areas inside.
But that’s where the glitz and glamour ended.
I happened to wear my “I Am The Face of Arthritis” T-shirt. I love this shirt and would wear it all the time if I could.
But within two minutes of entering the convention center, I felt like something was up. I was being stared at and given dirty looks. I asked somebody I was with if I was crazy to feel like people were staring at me, and she agreed that it was definitely happening, and often not very subtly, I might add.
I may have RA, but I am not blind. Hello all you people, I see you staring at me.
I was very taken aback by this response. Why are you in rheumatology if you can’t handle the realities of this disease? Maybe most of the people I encountered were researchers with little patient contact, at least I hope that’s the case. Because otherwise, I really don’t understand.
And unfortunately, the odd behavior didn’t stop at dirty looks.
The minute we mentioned we were patients and bloggers, people didn’t know what to do. One woman turned around and walked away without saying a word. Some people wanted to know what a blogger was. Not smart because if you knew what a blogger was, you would know that I would write about and share your rudeness with the world.
I understand that in the capacity the pharma companies were in at ACR, they are concerned with being accused of trying to sell drugs directly to patients, which is a big no no. But, it doesn’t mean that they have to be rude and ignore us. You can welcome us to ACR.
I’m sorry people, but let’s be real. Us patients help you pay your bills and keep your families fed. You might want to be nice to us.
First and foremost, ACR is an academic conference. That was made abundantly clear. But if “patient” truly is a dirty word at ACR, than the priority of who is being served needs to change.
And the members of Janssen Biotech who were present and hosted the Joint Decisions Empowerment Summit in conjunction with CreakyJoints, were amazing. They treated us like celebrities, really listened to our experiences and feedback, and pulled out all the stops for us while we were in Boston.
In finding out that ACR is pretty not patient-friendly, made the rest of my Boston trip so much better because of how amazing it was.
I’ll be the first to admit that I only got a small glimpse of what ACR is all about, but what little experience I did have, really didn’t meet my expectations.
I’m sure that in writing this post, I will probably end up on the ACR blacklist and will never have the opportunity to attend again.
And of course, illness didn’t stop there. I got to the airport to catch a plane to New York, and was told by TSA that I was moving too slow. Really? Do you see what my shirt says? Learn to read and then tell me I move to slow. When I got to the other side of the security checkpoint, I feverishly grabbed my belongings, not wanting to be rebuked a second time for my speed or lack thereof. And the security guard on the other side of the checkpoint told me to take my time to make sure I didn’t forget anything. Come on government employees, pick a side. I’m considering looking into TSA-pre for the simple fact that I won’t have to go through the whole thing with taking my coat and shoes off, taking my laptop and toiletries out of my bag, and then having to put it all back together again.
Overall, I will say that I suspect that some of us bloggers don’t get out much, considering the antics that occur when we’re together, including finding a million and one ways to screw with the cardboard cutout of Matt Iseman.
Aside from ACR and TSA – see, nothing good can come of abbreviated organization names – I truly had the most amazing time with my fellow RA bloggers. Old friendships were strengthened and new friendships were forged. And I’m still standing, despite the dirty looks and slow comments.
|I know what you're thinking. Way to keep it classy, Leslie. But I am keeping it real. This goes out to lupus, RA, ACR, anyone that's ever doubted me because of my illnesses, and whoever keeps calling my cellphone and asking for my dead dad.|
* Janssen Biotech paid for my travel arrangements to Boston for the Joint Decisions Empowerment Summit and my attendance at ACR, however, the views and opinions expressed here are my own.