*** This is NOT in any way directed to any one individual-so save the outrage in comments/Tweets/Facebook posts***
*Please read the entire post before forming your opinion or commenting*
Yes, this one is kinda long, yes I use cuss words here and there.
If CPPs want to win this war and get things changed – read this and think about it.
There are many CPP advocates who are doing a great job on social media.
Sadly,there are a whole lot of others who are doing much more harm than good.
Responding to Tweets by replying en masse,with 5-10% of the responses being intelligent,well thought out,clear,concise replies – and 90-95% reading like the ravings of unhinged lunatics is NOT the way to help our cause.
It makes CPP’s seem like the raving, drug addled ,only want meds to get high people we are portrayed as in many media stories,and seen as by non-CPPs on Twitter,Facebook,etc.
Many CPPs post Periscope and You Tube videos in which they intelligently,clearly,concisely make their points,often backed up by citing their sources.
That is great,and those people should continue to do so.
Others,however,make videos in which to anyone who is not a CPP affected by the current insanity restricting pain meds – they appear to be stark raving mad.
Others do videos, write articles on websites and blogs, claiming they are the only ones who have all the facts, they have “inside information”,they are the only source to be trusted, etc.
Many times, these people do not in fact have the whole story, do not have any inside info – nor do they have all the facts.
What they are doing is putting out misinformation, disinformation, and “facts” that are just plain wrong.
As with anything else – those involved, who are working on the issues day to day – in person -are the people who do have the facts, who do have all the information – the CORRECT information.
Pretending to have all the info, have inside info etc. not only is disrespectful to those actually busting their asses – in person – working on the issues, it hurts their efforts when others take what is in effect a commercial manure spreader and spread what is utter bullshit as fact.
This also greatly hurts the efforts of those who are doing the great videos.
If,and I know its a big if at this point-any of these videos start getting media attention-which ones do you think the media will give air time to?
The clearly well thought out,carefully worded,well researched – containing avtual facts – videos that layout points,ideas,and and thoughts in logical fashion,with the person speaking calmly and clearly?
Hell no-it’s the media-they’ll air the shit that looks like the person is an ongoing train wreck.
The media will pull Tweets and Facebook posts with people attacking Dr’s,researchers,the CDC,CMC,FDA,DEA -and…other CPPs,other advocacy groups.
How do you think that will affect the non CPP public’s perception of CPPs,and what is being done to us?
How do you really think reporters,politicians,and .gov agency reps really react to things like Resistbot,and mass e-mails,mass Tweet replies,mass Facebook replies when 90% of what is sent sounds like the rantings of a madman-on LSD?
FFS people think.
Stop and think.
You are helping push the anti-opioid zealots narrative by appearing to be exactly like that person which they accuse us of being.
You want to send mass e-mails? Do resistbot? Mass reply to tweets and Facebook posts? Mass reply to reporters,Dr’s,politicians, .gov agency heads/reps?
Write a message/reply that is calm,rational,reasonable,sounds intelligent – don’t send unhinged rants.
Most CPPs on social media are in one or more groups-have whoever is the best researcher,the best writer,the most informed on current issues in your individual groups write the message- even if it’s writing a template that each person can add a little to.
If you state something as fact – back it up with a credible source.
Cite the sources of your info.
It’s not that fucking complicated people.
If you’re pissed off at a reporter,researcher,Dr,politician,anti-opiod zealot – and you feel you have to respond – do so calmly,rationally,using facts and logic.
Threatening them,calling them names,calling them murderers does nothing but harm to the CPP community.
It leads to all those people thinking all CPPs,all CPP advocates are freaking psychos.
Stop that bullshit.
Every threat,every name calling Tweet and Facebook post,every unhinged video rant can and WILL be used against CPPs/advocates.
STOP this shit-right fuckin now.
Rant away in private groups-rant away in CPP threads where outsiders stir up shit-
Just keep it out of public view-don’t post Tweets /comments/replies in public forums that make us sound like raving lunatics.
We are all pissed off,we are all in pain,we all go off on the idiots on social media-I get that,I do it as well.
The public who are not CPPs,who do not have family members who are CPPs know nothing about what is being done to us.
We need those people to see us as normal people-not the unhinged whackos we appear to be at times.
The public perception of us needs to be that we are neighbors,co-workers,members of the community,in other words-we are just like them,but we have chronic illnesses/injuries that make our lives a living hell without proper doses of pain meds.
We have to change the narrative that we are all addicted to pain meds.
We have to change the public perception that physical dependency = addiction.
We have to change the narrative that Rx pain meds caused the “opioid epidemic”/”opioid crises”.
We have to change the narrative that reducing the number of opioid Rxs will reduce OD’s.
We have to change the narrative that every opioid addict first became addicted to Rx pain meds.
We have to change the narrative that medical cannabis is equal to opioids for pain relief.
Unless we change public perception-we lose.
We change public perception by appearing to be the intelligent,well informed,calm,rational people we are.
I can go on rants as good as anyone-but it does us no good. It makes us ALL look bad.
Personally,I feel those responsible for cutting us off safe,effective pain meds should all be tortured in creative,very painful ways-with a couple Bufferin as the only pain relief offered just to prove a point.
It’s a nice fantasy-it’s not reality,and it’s not how we act as a civilized society.
We have to change things by being seen as “normal” people. We have to be seen as calm,intelligent,and well informed in order to counter the narrative that we are all drug addicts seeking a high,that we just want drugs.
The public does not understand chronic pain or chronic illness.
They do not understand that opioid pain meds are the only effective relief for many of us. They do not understand that MME’s and dosage limits are utter bullshit.
This is what we have to make the non CPP public understand.
We do this by presenting factual information,from credible sources to back up our statements.
We will never change public perception by sending nasty Tweets,name calling,mass responses in which most responses are rants,posting videos which are just ranting and raving.
We have to engage in dialogue,have civil discussions with the anti-opiod zealots,the politicians,the .gov agency heads -even though we all feel they deserve getting screamed at and cussed out – doing so only makes us look bad,and gives them “ammo” to use against us.
Their response to mass replies in which far too many appear like raving lunatics?
*** “see we told you these people are all just a bunch of crazy drug addicts/drug seekers-look- all they care about is drugs-look at their Tweets/facebook posts/comments-they don’t care about the damage opioids do” ***
I hope ya’ll understand why I said all of the above now. I hope you get it,because if you don’t-we are going to lose this fight.
Think about all of the above-get it together – stop damaging our efforts-
see this post for more on people damaging the efforts of others…
Work together to write messages,Tweets,Facebook posts.
Stop attacking advocates who are making a difference.
Stop stealing others ideas
Stop duplicating others projects
Stop claiming you are trying to unite people when you are part of the effort to take others down.
Stop starting rumors and spreading lies about advocates who do not promote you/ your group/ your ideas.
Stop trying to be the one in charge stop trying to be “the leader”
Stop stealing the work of others and claiming it as your own.
Stop trying to claim you are the only one who knows everything about a situation you are not even involved in.
Stop trying to take advantage of others to make yourself look good.
No one has to promote your group.
If your group is so fucking great – then do something to prove it – let your work, your idea – your OWN work – your OWN idea – not stuff you stole from someone else-prove it.
Stop the bullshit – those doing this shit – and they know damn well who they are- will destroy any progress the rest of us have made over their personal agendas, their sick desire to control others, their desire to have “the website” “the blog” be “the leader” be seen as “the one person who made the difference” and in some cases – the desire to create a source of income off of advocacy.
Stop this shit. The only people being harmed are those suffering in pain – and the few pieces of shit in the CPP advocacy community are doing serious harm to those who are suffering.
These sick fucks see nothing wrong with taking advantage of vulnerable people. Or making $$$ off of them.
What these few sick fucks would do if they had a conscience is apologize for the shit they have caused – and are still causing – then delete all their social media accounts.
That won’t happen though – because they are sick fucks.
Instead – they’ll ramp up the level of attacks because they see a few people actually making a difference.
The rest of those in the CPP community who are fighting for change, and who don’t take part in this shit need to stand up to these assholes.
Stop letting them take advantage of you.
Stop letting them bully, shame, use your empathy to get you to support them.
Support who you choose to support.
That is YOUR choice, and yours alone.
When you see these shitstains attacking others in Tweets/ threads – call them out for doing it.
Those of us who are trying to change things, who actually care about the people being harmed by opioid hysteria induced policies have to stand up to those causing drama, dividing the community, spreading lies and rumors.
It will never stop unless we stand up to the asswipes doing this bullshit.
Most of you- understandandably – try to avoid the drama.
We aren’t getting anywhere by being neutral.
The nonsense is getting worse.
Time to stop being Switzerland.
Most of ya’ll are ladies…
Time to be like this lady…
Hope ya’ll at least got a laugh out of article linked above.
Seriously though – don’t put up with this shit from the few who are causing problems.
The sooner their bullshit is stopped – the sooner the rest of ya’ll who are kicking ass and doing good work can get things done… things that actually help the CPPs
Those who are kicking ass and doing good – thank you!
Keep doing what you’re doing because you are the ones who make us all look good.
To the shitstains trying to “take people down” because you’re all butthurt that they refuse to support you or your projects-think about why they won’t support you.
It’s not hard to see what is being done to hurt certain people in the community – nor is it all that hard to see who’s doing it.
Stop this shit.
***No one else contributed to,gave advice,made suggestions,helped edit,or did anything in the way of this post being written-this was all me after watching a whole lot of nonsense going on in the CPP community lately.***
STOP READING MY MIND!!!! No seriously, I have thought many of these same things, sure we all get angry and want to rant. I’ve done plenty of that, but even then, we have to try our best to back it up with facts. I hate the really completely out there conspiracy theories. Yes, I believe that there are people who don’t give a damn if we are hurt, they don’t even care if we die, but I don’t think that is their purpose. Money and power is usually their purpose and we’re just collateral damage.
Part of our problem is that we come from all walks of life, geniuses to dumbasses, wealthy to poor, the entire political spectrum. That makes it hard to control the kinds of posts any one person is going to say. In the case that someone says something really stupid, all we can do is ignore it, but more often than not someone (or more) chooses to engage. I wish they wouldn’t!
I have worried that some commenters are doubling or tripling up on meds because they do come off as drug addled, and that is the last thing we need. There is one lady who comments on apparently every chronic pain website and news article who,,, drives,,, me,,, insane,,, She makes no sense, argues and threatens, and comes up with the most ridiculous garbage rants. Lord help us! I’m embarrassed for her and because of her.
Then there are the trolls, fighting with them takes energy we don’t have to waste on bull, but some are determined to do it anyway and it ends up making us look bad.
As for the infighting with the advocacy groups, I don’t know what is going on there, but it’s shocking and should not be happening. There is so much work to be done, each should be proud of what they are doing, but also of what others are doing. Not intimidating others or trying to ruin the work they are doing. I hope it stops, but if it doesn’t, it might take people in the know telling the rest of us what is occuring behind the scenes. I don’t want to be supporting the bad actors amongst us.
The last thing, videos. I would really like to tell even the good ones to write a script and run through it a couple of times. You can tell they aren’t sure where to start, lose track of where they were, waste a lot of time with the “um, uh” blanking out. If I am tempted to shut it off after 3 minutes, someone who isn’t a chronic pain patient will shut it off before the first minute is done. Also, if it takes 5 minutes to get your point across, don’t make a 20 minute video!
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I’ve wanted to publish your words so many times!!! Please send to Steve, Pat or Ed, one of them might publish sands profanity! We need more ‘advocates’ to read this and wake up. Thank you for your honesty. Valorie Hawk, C-50, Coalition of 50 State Pain Advocacy Groups.
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Feel free to send to whoever you want to.
Okay, so it is because of these drug prudish people that our lives are all hell and because of people who don’t believe in pain. Maybe there is exasperation in all of it.
Thank God someone had the balls to put pen to paper and expose what’s really going on here. I myself, have distanced myself from one “advocacy group” in particular because of this nonsense! If I said anything, then I was personally attacked for trying to help these people out. At first I justified their behavior remembering that we’re all in pain here or watching a loved one suffer but then I started to see the bigger picture and it was one that I didn’t want to admit that I had “seen”.
I was emotionally and physically exhausted after trying to help these people. It was a full time babysitting job and it was frightening to witness. It didn’t take me long to figure out that I can’t help these people and that I no longer could be associated with this group. They valued nothing I brought to the table because they didn’t want to hear the truth. Thanks for an excellent article