I have blogged about survival mode before. This is when we push through the pain long-term and get to a state where all other aspects of our lives shrink, we only do what is fundamentally necessary to exist and life is Just an existence. We do what we must and crash and burn at the end of the day. It is crawling inch by inch through existence. And I have talked about how extremely dangerous a state it is to be in. I talked about when I was in it. I talked about how I got out of it. See: Survival mode is not meant to be lived in
What I have yet to discuss is a very important societal factor to the issue. The fact with chronic pain we are between a rock and a hard place very often.
We have obligations just like everyone else does. Financial obligations. Families to support. Food to buy. Bills to pay. Some of us are single parents and that means 1 income. Some of are not single parents but we still need both incomes.
And how does one typically Do that? We work.
So when chronic pain enters our lives or gets worse we have a big problem
We have our obligations that we have to maintain. Sort of have to feed ones kids. Sort of have to pay that mortgage and bills. Things like that have to be done.
We have society telling us to just push through the pain and function like a normal person.
We have actual people telling us to do the same thing. Just push through the pain….
We very often have a workplace that doesn’t want to accommodate us and it is like pulling teeth and even when they do it is minimal, not allowing for any actual flexibility that would allow us to pace and cope and do pain management and work at the same time.
And it makes for an unsustainable exceeding our limits every single day sort of problem. Survival mode.
I knew I had to work because I knew we needed two incomes to support ourselves. I knew that. I knew I wasn’t functioning well at work. I knew the pain was not managed. And too much to cope with. I knew pushing through the pain was causing me to burn out and having severe emotional consequences. I also knew I had No choice.
Now imagine I had 1 child to take care of. Or more. That no choice would become ‘Absolutely NO CHOICE’. It wouldn’t just be me to consider but the welfare of my children.
My employer wouldn’t accommodate at all. And of the options they wouldn’t even do, those were basic minimal things. Not the sort of flexibility I really needed.
So my life shrunk. Stop that social life. Cut out every single thing other than work and crash when you get home. Work. Crash.
And the pain gets worse. And you get more sleep deprived. And depression kicks in. And and and… soon burn out happens. And then you go on a short term leave. And start all over. And it happens again but worse. And another short term leave. Rinse. Repeat. Until suicidal ideation is the norm. Until suicide is an option you not only consider but plan. And then try.
And then my vertigo happened and I couldn’t pretend to push through the pain anymore because the vestibular symptoms could not be pushed through- I had become disabled whether I wanted to be or not. And no one wants to be disabled.
The rock and the hard place. Working doesn’t work. Being disabled is like is below the poverty line income- and that impacts ones life substantially.
Becoming disabled drastically affects our income. And also the choices we can make for the things we do to manage our chronic pain and chronic illness- a lot of which are out of pocket. And those pockets become totally empty. You have to severely alter your budget. To no budget at all for anything other than essentials. And have luck with debt- because that likely isn’t going to get paid. Emergency funds go pretty fast and then you have nothing when something happens. So this is not a choice we would make. This is a last resort. This is a thing that happens when you have no choice left. You Can’t function to work. Or you Would.
So other than the last resort many people choose to push through the pain and exceed their limits every day in order to actually support their families. There isn’t actually any options. And that means more pain, more of an emotional toll, more stress, more of the negative consequences. And higher risk factors associated with survival mode itself. But what do you do when you have no choices and a job that allows for no flexibility? You do what you must to survive.
Society makes no Space for us
People who have invisible disabilities like chronic pain are not exactly taken into account for in the workplace. Often accommodation is minimal, at best. I hope the pandemic will at the very least change that and more options will be available long term. Like flex-work, shared jobs (two people work one full time job) and working from home- because these are the options that Actually help people with chronic pain and chronic illness be able to function and still work. Without burning out. We can still do the things that help as manage and we can pace and we can do many of the things and tools we use to cope- and work on a more flexible schedule.
If the world allowed that, many of us would be working. Not all of us. Those would have substantially helped me a while back. Not now. But back then, yes. And that would have been so freaking awesome. To think I could be productive, valued, and have my career still in a workplace that had flexibility options would have been so awesome. But that isn’t the world I lived in. And I burned out hard too many times. Showing quite well it was functionally impossible for me to work full-time, that way, and hard even part-time since my brain doesn’t care if I have more days off it acts up when it wants to work day or not. It was better part time, since I had recovery days. But not sustainable Income wise, Either. I need flexibility and there is no such thing in that industry or many industries.
Basically both options suck
So we can work out butts off, be way worse off mentally, emotionally and physically. With possibly worse consequences and possibility burning out. But make a decent income to support our families and meet our obligations. How long that can be sustained is different for us all. But for me I made it about a decade or so (with one long term leave and several short term leaves, so not an employee my employer Valued for that reason). And I had severe depression. And two suicide attempts. All to try to make a sustainable income.
Or we become disabled because we can no longer function, as happened to me when the vertigo started and never stopped 4 years ago. And then you have next to no income. And that is even harder to deal with or figure out how to exist on. And I have no kids. I do have a common-law spouse which helped. But then Pandemic! And he lost his job- and he was the only one making money. Not like we can live off of what I ‘make’. So this ‘option’ blows. But it isn’t a choice by the time it comes along. It is a Must. You have to become disabled because there is no choices left. Which sucks. Then you just have to find a way to deal with the rest. Financial stresses become a thing that is always there. I don’t have a problem living simply though. That part is easy. The problem is living ‘necessary’ is expensive. Like food prices continuously going up. Not cool.
So when someone is working with chronic pain do Not assume they are thriving or they have less pain. It may be that they are holding on as best they can because they lack choices. They are just trying to survive as best they can. And the world isn’t exactly helping them in any way. I’ve been there myself. It did not work out well at all. But maybe for others without the risk of depression they might hold on better than I did. But it is still survival mode and that is a hard way to exist, man.
When we have options like flex work. Or we can work part time because we have a partner who earns enough full time to make it feasible for us budget-wise. Then it is possible to work and cope and manage and pace. Do wonderful things. If we can manage our pain and pace- and work- we can succeed. No matter how you manage to do that, we can succeed in the workforce if we can achieve that. Depends on the type of work, the type of flexibility, the hours, how we manage our pain, how we manage pacing- all sorts of factors. So some of us Do thrive in the workforce. And that is awesome.
But many of us are stuck in between that rock and a hard place. In survival mode working but can’t afford to not work or be disabled. And that really means the system doesn’t work for us at all.
It would be great if we could, after the pandemic, welcome a flexible workforce as it would help a whole lot of people and not just the chronically ill. Just with work/life balance alone the benefits would be substantial.