The Persecution of Chronic Pain Patients Births an Advocate
Chronic Pain, Endocrine Disease, Gastrointestinal Disease, Immune Disease, Mental Health, Migraine, Rare Disease
Issues and Challenges
Arielle has encountered: Access to Medicine, Medicare / Medicaid Issues, Disability, Discrimination (nonmedical), Gaslighting, Invisible Illness, Medical Discrimination, Social Security Disability, Transparency in Health Care
My name is Arielle. When you first see a picture of me, what would you assume about me? Would you have guessed I have multiple chronic health issues leaving me permanently disabled? Probably not, right? I have multiple “invisible” illnesses. They don’t feel invisible but to the outside world they often are. I am also what’s called a chronic pain patient (CPP for short) & this aspect is what made me fall into advocacy.
I learned around 2017 that things were quickly shifting in the world of prescription opioids. I was learning of people suddenly being reduced or cut off because of the 2016 CDC Guidelines. By this point in my life I had an intrathecal pain pump & wasn’t receiving oral Rx opioids anymore so I wasn’t being affected & only learned of the issues because of other CPPs on Twitter. It quickly became a rabbit hole of learning the manipulation that happened behind the scenes of the Guidelines, how the CDC conflated & inflated overdose numbers, & all the shady players involved in all of it. It seemed like politicians just started going along with it all to appear to be doing something about the “opioid crisis” without actually delving into it & addressing the root causes. By this point I had become what a good friend & fellow advocate calls an “accidental advocate”.
Since then I have been advocating for CPPs to have their individualized care restored in order to get back the quality of life they once had. Because I’ve been lucky in so far having my pain pump dosage excluded from limits, I feel the need to fight for all those that can’t even though I know I could still be next. I have accumulated an extensive library of sources, data, & studies to help back us up & am always trying to help my fellow advocates in finding any helpful information.
What I hope people take away reading this is how important it is to treat everyone as individuals & to not assume they know what someone is going through. All patients are different & should be treated as such instead of the current restrictions that treat people as one size fits all with blanket treatments. CPPs on Rx opioids were never the ones contributing to increase in overdose rates. Addiction rate for CPPs is less than 1% (1), yet we’re the ones being treated like the cause of the crisis.
Facts & info, such as the point that most that did abuse Rx opioids didn’t start with a legal prescription (2), are being swept under the rug for a sensationalist storyline that’s only causing harm to both pain patients & those in the addiction community. Individualized care is not just for CPPs, but for EVERYONE.
So I ask of you, next time you see someone struggling with pain or any sort of health issue, think before you talk. Then evaluate the first thoughts that come to mind. Did you make assumptions or preconceived notions about them? Are you viewing them based on inherent biases? Did you assume they’re just “addicted”, faking it, or presuming to know how bad they’re feeling by believing they are overreacting? Or are you viewing them as an individual for whom you don’t know what they’re going through & that you believe what they’re saying about THEIR health? Make sure it’s the last one, even if you have to shift from your first thoughts.
1 - https://www.cochrane.org/CD006605/SYMPT_opioids-long-term-treatment-noncancer-pain
2 - https://www.dovepress.com/todays-nonmedical-opioid-users-are-not-yesterdays-patients-implication-peer-reviewed-fulltext-article-JPR
as well as yearly SAMHSA report
My Motivation and Inspiration
My motivation is my fellow chronic pain & disability advocates & knowing I have to fight for those that can’t.