I haven’t had a good guest post in a long time! So I thought, I should really have a guest post. Low and behold ask and you shall receive!! Many of the people I see living with long term pain are on a workers compensation (WC) scheme. It can be a pretty stressful ordeal for them and so I wanted to share a friends experience with you. I met Joletta Belton (pain blogger from Colorado) at the San Diego Pain Summit this year and we immediately hit it off! In fact I was so impressed with how her mind was so attuned to mine I swear we were separated at birth! Perhaps a bit extreme but I know Jo will agree that we do share a very similar mindset!!
So without further ado, I’ll hand you over to Jo.
I went on a bit of a rant today, a rant that is years old but still fresh and still hurts a bit so I think it may be worthy of talking about. It was about my experience in the workers compensation system after my injury and early years of chronic pain. I’m not the only one to have such a rant, and I’m sure I’m not the only one who has not done much constructive about it. I hope to begin to change that, to share my experience and reflections in hopes that maybe something productive can come out of it.
I want to preface this with I don’t think the people in the work comp system are bad people, I interacted with some wonderful people during my time in the system and I had vocal advocates who I felt had my best interest at heart. It’s the system that’s broken and that’s harmful in ways that often go unseen, that are never talked about, that can royally screw people up. We need to talk about. We need to address in some way.
I get that not everyone (me included, I’ve not taken up this mantle, either) can be advocates for reform and that if/when any changes do take place it will be a long time coming. But there are things we can do right now, today.
We can recognize the stress and strain that people in the workers compensation system face as an issue worthy of addressing. We can validate people’s experience with the system without bashing it or placing blame or looking for who or what’s at fault (which only increases anger and frustration) so that we can find productive ways to move forward. We can solicit from folks what their experience has been and how they think it might be affecting them and listen to their answers while providing empathy and support. We can hear them. It is only then that will we know where they’re coming from, what burdens they are bearing beyond just the quality and severity of their pain, their fears, worries, concerns, struggles, and barriers. It is only then that we can really help.
I don’t think people know how terribly stressful the work comp system is, including the patients who are themselves in the system. I sure as hell didn’t when I was in it. It never occurred to me that the stress I was under from being off on work comp was significantly impacting my pain and my health. Looking back now I see it as the worst part of my pain experience. Looking back I honestly think that I may not have continued to have chronic pain after my surgery if not for the thirteen months of work comp stress that came before it. Thirteen months not only of pain but of having no diagnosis, of being uncertain, lost and confused. Thirteen months of constantly having to wait for appointments while worrying about how we were going to pay our mortgage. Thirteen months of wondering what the future held. Would I still be able to work? Run? Lift? Ride a bike? Freaking just sit on furniture without excruciating pain?
Not only was everything drawn out, I had to keep proving that I was in pain. I felt doubted and on the defensive. At one time I was accused of only pretending that I couldn’t drive so I wouldn’t have to work on light duty. This at the time when I couldn’t sit on furniture, let alone in a car, for more than a few minutes, seconds even, without unbearable pain. This at a time I was begging for a work-from-home assignment. This at a time when all I desperately wanted was to be fixed so I could go back to work.
It was devastating. Not only was I already suffering identity issues from no longer working as a firefighter, which had wholly identified me up to the point I suddenly was no longer one, my reputation was in question, too. I felt worthless. Lost. Anxious. Depressed. I was afraid. It sucked.
The work comp system seems to be set up to prevent fraud and reduce costs first, treat patients second.
As I see it now, my systems were uber sensitized because of all those unaddressed issues. I was being in constant, worsening, worrying pain with no diagnosis for 10 months. When I finally did get a diagnosis, I had to wait another 3 more months for surgery because my surgeon’s recommendation had to go through 3 medical reviews. And while waiting those 3 additional months I received no treatment.
My pain got worse.
I wasn’t exactly set up for a successful outcome, despite my best efforts.
I hit physical therapy hard after my surgery. I was a superstar patient (no really, I got an award!). I was going to get back to work, dammit, and do whatever it took. The surgery fixed the cause of my pain, after all, so all I had to do was get my range of motion and strength back, right? That’s what I was told, that’s what I believed. So I pushed through pain in order to get better faster. As my strength and range of motion improved, my pain got worse. Steadily worse. Superstar I was not. I got more worried. More anxious. More freaked out. I mean, clinically/anatomically I was fixed and there was no reason for my pain, right?
Talk about fucking you up in the head!
At one point, months after my surgery, I hadn’t slept for two weeks because of the pain. I felt like I was going crazy, I desperately needed help. I wanted more physical therapy so I called my claims adjuster and was told that if my pain was as bad as I said it was, I should go to the emergency room. I was back at work then, on light duty, and I lost it, right there in my civilian office as I’d already been told I was permanent and stationary and could never work as a firefighter again. I hit bottom and felt pretty alone in that deep, dark hole.
I’m not the only one to have such experiences. The WC system can be a horrible experience, even when things go ‘right’. We need to talk about it and address it, even if it’s uncomfortable, even if we’re unsure how to. Even if we can’t change the system, we can change the effect it has on people.
Patients need to be reassured that they are believed and are heard. They need to know that they might be under a great deal of understandable stress and strain because of what they are going through, not just the pain but all the shit that comes with being off work and in an oftentimes impersonal system. We need to recognize that this stress affects health and pain and needs to be addressed (of course as appropriate for any given patient and with more finesse than I’m presenting here).
And even if it’s not work comp that is weighing someone down, there is a weight they are bearing that they probably haven’t talked about, that perhaps they’re not even aware of. Folks who are chronic have often been trying to unsuccessfully figure out their pain for a while, that’s fucking stressful, too! There’s a lot of shit that comes with it so being told you just need to strengthen your hip or wake up your glutes or that your SI joint is dysfunctional and you need to fix your posture doesn’t help. And just being told pain science and given some exercises as homework doesn’t help either.
It can be hard to think and process when we’re in pain, even harder when we’re dealing with a system that is difficult to navigate, when our capacity for pretty much anything is pretty low and pretty well sucked up by paperwork and adjusters and proving that we are deserving of treatment. People in pain need to be met where they are, not given some standard treatment that may be wonderful but will be totally useless if it’s not made relevant to their lives: to their pain, their experience, their history, their situation, their beliefs, their goals, their knowledge base, their willingness.
We all need to be heard. And sometimes we need to be prompted into the telling. So ask. Please ask. When asked, please tell. And then listen.
We need to talk about this.
Thanks to Jo for sharing her experiences of the stresses that came along with workers compensation. All those people out there on workers compensation I hope this post offers some help and guidance to you. As Jo said don’t be afraid to ask and discuss, it’s important that you are heard.
Thanks for having a read