Dear Politicians & Comedians,
Like too many American’s, I am a chronic pain patient resulting from both disease and musculoskeletal problems as a result of both trauma and genetics. Along with being a patient, I’m a “health activist” who has tried for years to bring attention to this invisible disease, unfortunately some recent news events and Super Bowl TV ads have proven that I am not doing a good job. So, in the spirit of my retired 1-star general dad’s “come to Jesus” meetings, let’s talk.
I am a patient who is just trying to lead a meaningful and mindful life. The simple truth is as this countries chronic pain and arthritis communities have expanded, medical research into possible cures or disease management has declined. Basically, only patients, non-profit groups like Creaky Joints and the Arthritis National Research Foundation, and some providers are talking about chronic pain and arthritis currently. Now, I get it, chronic pain and issues like arthritis are not the sexy issue of the day like other diseases. There is no NFL pink out for arthritis which means no TV audience, which means you don’t care (yes I know that is cynical but I’m in pain so deal with it). Simply put, that is not my fault so back off and quit stigmatizing my friends and me for nothing more than trying to cope with our diseases.
Let me ask you 2 this, how many of you know that kids as young as 1 year old can get an autoimmune disease called juvenile rheumatoid arthritis? Yes, kids can get arthritis too. How many of you have any idea how to pronounce ankylosing spondylitis? Any guesses on how many ER doctors or primary care physicians know how to treat this particular disease? How would you like to be a 20 something college student trying to figure out how to manage a raising tuition bill while paying $5,000.00 a month for their rheumatoid arthritis biologic medicine? What do you think their debt load is after graduation? Any of you 2 realize this is the daily life a typical chronic pain patient.
Let’s take a moment and talk about destructive advertising. Only a small portion of the arthritis community and chronic pain patients can take 2 pills and run on a beach with our golden retrievers despite what you see on TV. No one on TV is talking about chronic pain medication’s or treatment options. Most of TV (comedians) is/are reinforcing the stereotype that arthritis and chronic pain is nothing more than a grandparent issue. Talk about a mountain of a stereotype; try explaining to a “healthy” that kids get arthritis too. Not a fun job!
Now, for all those governors or other officials sending letters to the OIC manufacturers, please just shut up. OIC drugs are needed because of the lack of new treatment options and stereotypes created by you and comedians. Stigmatizing patients, and addicts for that matter, for you neglecting to create and advocate for chronic pain research, education, and literacy is downright criminal on your part. Like I said, please stop scoring political points on patients backs that are just trying to live and cope. It is not right!
Now, I do have good news politicians and comedians. My fellow patients and I want to help make you statesman regarding this important issue. We want to sit down with you and talk about our individual patient stories. We want to be a part of a solution…actually we are demanding it but “want” sounds nicer. Chronic patients deserve just as much respect, education, and literacy from fellow citizens as cancer, diabetes, or heart disease patients get.
Finally, many in my community don’t want to be associated with their disease. However, I don’t care if you want to associate me with chronic pain because I define what it means to be a chronic pain patient. I’m a full-time employee who skis, road bikes, is a gym rat, has earned 2 degrees, owns a house, is a mentor to conferences like Stanford University’s Medicine X conference, and most importantly, I’m a family and friend to many who is also an arthritis and chronic pain patient. I want, no deserve, just as much research and respect as heart disease or diabetes for example. My fellow chronic pain patients are individuals just like you seeking to live a mindful and meaningful life, don’t ever forget that!
P.S. I understand there are more diseases out there that kill more per year than mine. Personally, I find cystic fibrosis to be a scary disease that needs more help. Please, help my friends with this deadly disease too! I’m a strong proponent of cross disease advocacy too.