High impact chronic pain advocacy work and why I gave up fighting opioid hysteria

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I have been doing a lot of work, public advocacy and a lot of behind the scenes work for high impact chronic pain patients who rely on daily opioid pain medications to live a functional life.  I built a website, I’ve paid the costs involved with that website (domain names, hosting, themes), I’ve written articles and content, I’ve done the design work, I started social media accounts and pages, and I tried to recruit help.

I found two people willing to help.  And a lot more prepared to watch.  That’s fine, we all live with high levels of daily pain, we are all limited in our capabilities. 

But.  There’s another group.  A group of ladies who live with more mild chronic pain, as shown by their social media accounts and posts on a private pain group that I was a part of. I checked out their posts to get a handle on what their chronic pain conditions were.  They don’t live with high impact chronic pain and most of them don’t rely on opioids at all. 

The see themselves as “warriors” and their schtick is that they are stronger and tougher than people like me who are “weak” and need opioids.  I posted in this group looking for people who are being denied their opioids scripts or force tapered off their pain medications and received a major backlash from a group of ladies.  I didn’t pay attention to their names, I just ignored them for the most part.

I argued with one lady who told me I was “fear mongering” and that the new guidelines were not designed to deny pain patients their opioid medications.

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I told her that was quite true, they were not designed to deny pain patients but doctors were interpreting them that way and people WERE and ARE being force tapered.

She ranted at me, I politely told her she was wrong, and if she wasn’t affected, that’s fine. But other people ARE being affected and could she please help rather than hinder the cause.

She had me thrown out of the group. 

I started a private “action group” to brain-storm ideas for taking action against the new regulations and they force tapering of chronic pain patients off their opioid pain medications.

Apparently some of these “ladies” joined my group.

Every time I posted they argued with me.  They denigrated whatever I was saying. They told me what I was doing was worthless. That I was useless.  They sent me PMs telling me to stop fear mongering.  They accused me of breaking the law.  They told me my hard work was pointless.  It was ridiculous. I blocked the ones I knew about.  And I abandoned the group.

It was supposed to be an action group. ,to make plans and exchange ideas.  Only two people were active.  The rest of the group had zero interest, so I have no idea why they joined. It was NOT a pain support group, there’s other groups that do that.  This group was to unite pain patients and plan ways to take action.

I was interviewed by the media, which resulted in more trolling.  I wrote articles. I wrote to the RACGP in response to one of their articles which was anti-opioid and factually incorrect. They changed their article because of me, which was a pretty big success to be honest.  I did some podcasts, which haven’t come out yet.  I started creating educational materials for GPs, the science that pain patients can take to their GPs to show them what the studies actually say and to combat the “opioids are not effective for chronic pain” and “opioids make chronic pain worse” narratives that constantly get thrown about. Neither are true.  They are mythology that has taken on gargantuan proportions and are so oft repeated that people accept them as fact, without actually even having CHECKED the facts.

Doctors are too busy for fact checking. They just assume that the marketing materials are correct. Hey, isn’t that how they say the “opioid epidemic” got started in the first place?  Does medicine never learn???

I stared gathering the facts.  I put myself out there in ways that I am not comfortable doing.  I’m camera shy and very self-conscious.  I have no confidence. I am highly anxious.  I did this to try and make change. To DO something. TO make people understand and try to get people to care.  It was not easy and I wasn’t terribly successful. But I DID something.

These ladies just sat in judgement and picked on everything I did.  Bullying, harassment…their idea of fun.

And I’ve had enough. I gave up.  Its not easy advocating.  High impact chronic pain gets ZERO sympathy. There is huge stigma attacked to both living with chronic pain itself (faker, malingerer, hypochondriac, lazy, exaggerating) and huge stigma attached to taking opioids (everyone who takes opioids is an addict.)

It was just too hard. The very people I thought I would be helping, I thought would be behind me revealed themselves to be petty keyboard warriors more interested in admining a sickly private facebook group where they hold court and denigrate everyone who doesn’t live life they way they do – complaining, wallowing and pronouncing themselves as “spoonie pain warriors”.

I love the spoon theory, but the term “spoonie” never really resonated with me.  That goes double for “warriors”.  I have found in my 15 years of getting to know people online in the chronic illness communities that a lot of the people who identify the loudest as  “warrior spoonies” are far from warriors. 

I’ve met some great people online.  But I’ve also met a lot of nasty keyboard warriors who make up for a lack of career by sitting in judgement and bullying others.  They love to argue and they never let facts or science get in the way of their opinions.  They spread a lot of misinformation and disinformation and its why you have to beware of some online groups.  Some are great. And some are…not.

Bottom line…I wanted to help. I wanted to DO something. I tried. And I got trolling and abuse for my trouble. 

I didn’t handle it well.  I still don’t. So I stopped.

I live with high impact chronic pain, that is, pain that interferes with DAILY functioning. Pain that is SEVERE for at least part of every day.

People who have “chronic pain” that is either not severe, or not there every single day of their lives still live with a significant pain burden and suffer significant impairment and reduction in quality of life.   They may require opioids to help manage that pain, but hey likely need opioids when they have an exacerbation or a flare or their usual pain, when their pain is worse than normal. 

They do not require daily opioid medications and so they aren’t affected by the new regulations or the opioid hysteria and disinformation that is gripping the Australian medical community.

I would have thought that those living with chronic pain, even if less severe, would have shown solidarity for those living with more severe pain. But no, it appears not.  It appears they only care for their own interests and putting other people down.

There are all those horrible stereotypes about people who live with chronic pain. They are whiners, whingers, making mountains out of molehills. Lazy, don’t want to work, want to stay in bed and watch Netflix all day.  Won’t do anything productive to ease their pain like physical therapy or losing excess weight, or meditation or mindfulness or learn strategies to manage that pain like CBT or ACT.  They just want to take a magic pill and passively sit their lives out.

I hate those stereotypes. 

I’m horrified by how many people I came across who seem to fit that profile really, really well.  And I want nothing to do with those kinds of people.  They are an anathema for people like me who want opioids to improve our quality of life, to allow us to exercise, to work, to socialise, to take care of our families. To live as normal a life as possible.

Even if opioids only give me four functional hours a day, that’s much, much better than no functional hours a day!  So I’ve been fighting hard.

But these people are not allies.  You would think they would understand. Could easily extrapolate…what if their intermittent chronic pain became a daily event? What if their moderate pain became severe?

Surely they would support us, because it could happen to them down the road.

But no. They were only interested promoting themselves and their pain conditions.  They matter too you know!  Their pain is important TOO!

Well, of course it does, but they aren’t the target of this campaign right now, they are not the people having their lives ruined by the misinterpretation of the new regulations.  I’d have thought they’d be keen to help though. 

Not so much. 

I am not gatekeeping or power-levelling, but there needs to be a distinction between “chronic pain” and “high impact chronic pain”.

Its NOT the “pain Olympics”

I am NOT playing “my pain is worse than your pain” but there is a vast difference between waking up every day at an “8” and spending every waking moment managing pain to experiencing a bung shoulder once or twice a week for a few hours across the day.  Both suck.  But one is clearly worse than the other. 

When my chronic pain was not as severe as it is today I felt empathy and sympathy for those who had it worse than me.  Blows my mind that not everyone feels that way.

I am advocating for appropriate treatment for people living with severe, daily pain.  I am advocating for access to opioid pain medication for chronic pain where its appropriate, and arguing that it IS appropriate for some patients. 

Pain management needs to individualised and treatment plans created on a case by case basis.  It makes no sense to blanket ban the most effective pain medication known to humanity because someone in the US has got a bug stuck up his ass about opioids.

Pain is pain and all pain sux.  But pain that is more severe and pain that happens daily requires different treatment to intermittent chronic pain.  Doctors are more likely to support occasional opioids for pain flares while they are not supportive of daily opioids use.  Doctors are very concerned about daily use over a daily morphine equivalent of 90mg per day.

Many people who live with high impact chronic pain need more opioid than this imaginary upper limit and that’s where the force tapering begins.  Doctors have decided on their arbitrary limit, which flies in the face of the gold standard of individualised pain management, and are force tapering people to get below this threshold…and beyond.  Mostly the goal is to taper off opioids completely whether the patient agrees or not.

I’ve read accounts of people force tapered and having to stop working, stop exercising, stop living.  There have been suicide attempts and completions because people could not bear a life of unending pain with no chance of any relief.

The doctors who have caused this should be deeply ashamed. I believe they are negligent…derelict in their duty of care. But opioid hysteria has been marketed well, and doctors are evangelical in their beliefs that all patients must stop taking opioids for chronic pain.  Its an absolute travesty. 

It’s a fight that’s hard to win because there’s no one to fight it.  We’re all sick and in pain and have very limited energy and resources.  We must be one of the most vulnerable groups in Australia, but one that gets little sympathy from anyone.  The average person can’t comprehend daily, sever pain that is incurable.  You’re not going to fight a problem that you don’t believe exists.  The average also believes all opioids are terrible, addictive drugs and can’t possibly do any good.  They believe the addiction narrative easily because we’ve all been taught that since we were small.

Now this tiny minority of a minority needs to educate and advocate for opioid pain relief, with no money and no backing and no support.  Pretty big task. Depressingly so.

But I thought the chronic pain community could and would rally together. Maybe they still will, but not behind me.  I rubbed a few people the wrong way and that’s that.  All I get is hate.

The reality is, having chronic pain doesn’t make you a kinder, or smarter, person.  There are as many assholes in the chronic pain community as there are in the general community.  Maybe more.  What I found was a population of people with much less severe chronic pain who went OUT OF THEIR WAY to troll me and argue with me, dismiss my pain, dismiss my work, dismiss my achievements and accuse me of hypochondria and drama-queening and panicking over nothing.

Shit, if I wanted to be gaslit and victim-blamed I could have just gone to any one of my doctors, right?

I do NOT need this shit from inside the chronic pain community. 

Its always the same people and the same kinds of people. I found them in the RA community as well.  They are most often :

  • People who have less severe disease but make their disease/pain their entire identity.  As opposed to people like me who have severe disease but work hard to NOT make illness and pain their entire world, work hard to exercise, engage with life, work a job or a business…live as well as possible despite pain and illness.
  • They are often admins and run communities because they love the “power” and attention that comes along with that, not because they want to particularly help anyone (except themselves).
  • They are always, but always “warriors” and have higher pain tolerances than everyone else.  They also have more pain, more difficulties, more drama and they constantly hijack every thread with their own personal trauma.
  • They believe they know everything about their disease/chronic pain but often post misinformation.
  • They often believe naturopaths are equivalent to doctors, in training and medical knowledge.  They often buy into select “alternative” ideals like naturopathy and homeopathy yet are anti-yoga, anti-essential oils, anti-power-of-positive-thinking..the cherry pick alternative remedies when ALL of these treatments are equally ineffective.  (except yoga. Yoga actually helps a lot).  “Natural therapies” mostly don’t work at all and naturopaths are not doctors, you can become a naturopath or herbalist by doing an 18 month online course, half of which is teaching you how to run a business and sell product.
  • At the risk of stating the obvious, they are not very nice people. They gatekeep chronic pain and they comment on every post. They have a little “posse” of people who do their bidding and they all gang up to push their own ideas and ideologies.  They are cliquey and they do a GREAT disservice to the chronic illness and chronic pain communities because they fail to realise or accept that some people have it far, far worse than they, and they are actually siding with the anti-opioid doctors and making life far, far harder for those of us who live with severe, daily pain.  High impact chronic pain.  Just because they want to play their high school games.
  • They are the minority.  Most people are NOT like that.  But they are a very vocal minority.  I don’t know why people tolerate them in their groups.

Yes, I’m mad.  I’m beyond mad.  I’m hurt and angry.  Not only did all these people troll me for fighting for proper pain management (which they should have supported) they have left me disillusioned at the kind of people who I’m fighting for.  It’s certainly not the kinds of people who sit on the internet all day hiding behind their keyboards, throwing shade and insults with all the intelligence of a bowl of jello. 

I took cover and almost trashed the website and all the work I’d done.

And then my GP started insisting that I taper my pain medications lower.  My regime has been changed to what my pain management doctor suggested, but its not working.  I want to go back to my previous dose.  I need a higher dose to have the life I want to live. The life I am capable of living with proper pain relief. 

But she is insistent.

So I have to keep fighting.   I have to come up with a new strategy.  I have to find a way to get the message out. I need to reconnect with the few people who DO want to do something about this, and put my energy there.  Because its my life at stake. I deserve to have the best life possible and that, for me, and for many others, means long term opioid therapy. 

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1 COMMENT

  1. I am so sick of nasty judgmental people sitting behind their screens and being horrible to others just for the sheer hell of it. I use Opiods, the proper prescribed dose 3 times a day, 4 on a very very bad day. I stick to the Dr’s script. I’m in the UK and thank goodness we don’t, as yet anyway, have this issue. But without them I wouldn’t be able to go in the garden and do some light work with my daughter, I’d not be able to do my housework, game or do what needs to be done on a daily basis. When will these people realise that we have lost enough already and just want to be able to function daily and do the things we both need to and enjoy. P.S your last post, the long one just made me so sad that you are struggling so much and I just wish someone could find the answers you need. You need one of those medical teams off the Netflix show I watched about rare disease. Several different specialties that listen to all the history and then specific ones will take the case, both facinating and heartwarming when they finally got their diagnoses.

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