How Not to do Advocacy for Chronic Pain Patients

Social Media Advocacy In The Chronic Pain Community – December 1, 2018 – December 1, 2018 – Author: gamegetterII

I’m not gonna shut up because of the level of galactically stupid bullshit going on recently in the CPP community.

I wrote 5 posts about this ongoing nonsense – all are linked below – start with Part I and read them all. None are long, rambling posts, all are short and to the point.

After that, read what I’m about to write below the links.
Then actually think about all I’ve said.
Use the brain God gave you and freakin’ think.  

  1. Part I
  2. Part II
  3. Part III
  4. Part IV
  5. Part V

Individuals,and small groups of individuals have actively worked to sabotage the efforts of other groups and individuals.

There have been multiple efforts, by multiple groups and individuals, to divide advocacy groups.

Every movement in the course of history that accomplished change was done by multiple groups working TOGETHER.

Not every group knew every single thing the other groups were doing – but they worked together.

That is the ONLY way we win this war.

To win this war, we HAVE to get out of the social media bubble.

Sharing the same/similar info over and over among the finite number of CPPs on Twitter and Farcebook gets us exactly nowhere.

How true! We need to convince “outsiders”: doctors, nurses, and the general public, not each other.

I know my blog is also in the “echo chamber” of CPPs, but my intention is to inform with my research by giving CPPs ammunition to counter the baseless nonsense being spread by anti-opioid zealots.

The media continues to push PROPaganda, and the false claim that Rx opioids are the driver of the fake ass “opioid epidemic”
THAT is what has to be changed.

Taking studies, articles, media reports that are only partially good news for CPPs and dismissing them out of hand because they do not state exactly what we want to hear, or because you can’t stand one of the Dr’s that was involved gets us nowhere.

WE are NOT going to change this shit overnight.

Freaking out over partial changes, by claiming they did not give us all our meds back, putting down those who spent time, effort, and in many cases their own money to travel across the country to D.C.  and elsewhere to try to to change things like CDC guidelines,CMS opioid restrictions, the Oregon bullshit, and claiming they are against us does not in any way, shape or form help our cause.

You have to win the small battles to win the war.

We are not going to win every battle – we will lose some, we will win some.

The ONLY way to win this is incrementally.

Exactly. We have to look at the direction policy is headed in.

WE have to work together, the infighting bullshit has to to stop.

Read some history books on insurgencies, on guerilla warfare, on large civil rights/freedom from oppressive government  movements.

Q – Why were these movements successful?

A – Because people put their differences aside and worked together towards a common goal.

How Not to do Advocacy for Chronic Pain Patients on Social Media – December 10, 2018 – Author: gamegetterII

*** 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.

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.

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.

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 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?

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.

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.

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.

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.

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.

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.

Work together to write messages, Tweets, Facebook posts.

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.

These sick fucks see nothing wrong with taking advantage of vulnerable people. Or making $$$ off of them.

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.

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.

Time to be like this lady…

http://www.badassoftheweek.com/omalley.html

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!

6 thoughts on “How Not to do Advocacy for Chronic Pain Patients

  1. gamegetterII

    “I know my blog is also in the “echo chamber” of CPPs, but my intention is to inform with my research by giving CPPs ammunition to counter the baseless nonsense being spread by anti-opioid zealots.”

    Your blog has an astounding amount of great info. Lots of great articles, lots of great research.
    Definitely an asset to the CPP community !

    Liked by 2 people

    Reply
  2. peter jasz

    Lol. What a diatribe of verbose proportions; including your 5-part “concise/to the point” rant.

    Incredible.

    pj
    ( P.S. You were reduced/cut off opiates yet you remain working full time ? )

    Like

    Reply
    1. gamegetterII

      No. I can not work full time.
      I am self employed and can not do the work I could when I had pain meds.
      I spend many days, often many days in a row unable to get off the couch due to pain.

      Like

      Reply
  3. leejcaroll

    It occurs to me that when there are posts, articles, tweets etc most often it is about opioids and being taken off them (or tapered) and what that has done to our lives. The media, and just plain folks, might also take another look if at least sometimes we were positive, even about opioids. Instead of now I cant cause doc took me off, how about ‘when I was on this med, this dosage my life was so much better. it/they allowed me to (make the bed, go to work, care for my children etc.’. The conversation needs to be changed from opioids are the devils workshop to look at the good they do for many who have no other option/treatments/surgeries etc available.
    (Just think when you spend time with a frined who just complains usually you (I at least) end up tuning them out, Ive heard this negativity before and again and again and again. enough )

    Liked by 1 person

    Reply

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