By Ariann Grand-Gassaway
(Editor’s Note—When I saw Ariann’s tweet this week asking this question, I asked her if she wanted to expand. She did.)
Am I the most hated pain patient in America?
Hm. Maybe not, but I sure have been blocked, (censored), by a whole lot of people as well as by a few pain patient advocacy organizations. I know I’m not alone either, and I sometimes wonder if there’s a common variable on what we’re doing or saying to ‘earn’ being blocked.
In my case, as this relates to our some of our advocates, perhaps it’s the fact that I’m usually quite direct that earns me the block; using language that common people can relate to for the most part. (Including the occasional curse word, *gasp*.)
Perhaps some have taken offense when I remind non-CPP advocates that perhaps they should be interacting and listening to what pain patients are actually experiencing and needing, as far as their advocacy efforts go. Or maybe it’s that I’ve sometimes pointed out that very few of our non-CPP advocates come slumming on our threads to interact with us, nor engage much when we address them on their own threads. They do want us to share their articles and op-eds though, as well as support their efforts while showing our undying appreciation for it. And serious question: How can one know how to best advocate for someone else when they are so disconnected from those they claim to be advocating for?
Maybe I’m hated because don’t just ‘go along with the program’ like a good pain patient. After all, I’ve been told by both MDs and PhDs that pain patients just better get used to the PDMP as well as being drug tested like some parolee for the rest of their lives because those things aren’t going away.
Wonder how that would have gone down in the Civil Rights era? Some Civil Rights advocate/activist saying, “Dr. King, you just better get used to being profiled, discriminated against, and accept the fact that some of ‘you people’ are going to being harmed and killed in the process.” I think he addressed that sort of narrative in the infamous Birmingham jail letter if I’m not mistaken regarding ‘white moderates’.
But I digress; sort of.
As far as other pain patients hating me, I don’t get it. I’ve never wavered from fighting for everyone in my advocacy efforts. I’ve never asked other CPPs to do anything I am not willing to do myself, and I tend to try to focus on the needs of all in my advocacy efforts while trying my best to not make it all about my personal situation.
I even advocate for people who have issues with SUD as the national ‘opioid crisis’ response has done little to nothing to help on that front, which was supposed to be the objective wasn’t it? In fact, the billions of dollars being funneled to profile, study, and target pain patients would be better spent on improving access and efficacy of addiction treatment options if the actual goal is to reduce OD deaths. At this point though, I wonder if that was ever the goal.
Can’t help but think that maybe my voice doesn’t matter in this fight very much anymore. Maybe our advocates really do speak for most CPPs and I’m just ‘out there’ in my absolutism. Maybe most CPPs wish I would just shut up already. I really don’t know anymore.
Most hated? Maybe, maybe not.
All I know for sure is that I’ve never wavered in my position on this issue where it counts. I try to spark discourse, raise awareness, encourage people, protest, make calls, write letters, and have done my best over the last 6 years to be consistent in my efforts to help try to turn this situation around so that people are no longer suffering or dying due to yet another doomed to fail drug war.
And let’s be honest, that’s what this is really about everyone; another drug war. And make no mistake, there are PLENTY of people who claim to be ‘helping’ who are making a whole lot of money by keeping the so called ‘opioid crisis’ alive.
Arianne Grand-Gassaway describes herself as an old soul living in the mountains of California. In 2010 she sustained a C-spine injury in a tree cutting accident which causes constant, debilitating pain due to spinal stenosis, disc degeneration, and radiculopathy . Arianne also battles with Myalgic Encephalomyelitis, Fibromyalgia, and suffered with Adenomyosis for over 20 years.
If you’d like to follow her on Twitter, her handle is @ravensspirit68.
If you’d like to me on Twitter, my handle is @edcoghlan
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