In basic terms…
You see when you have chronic pain there may be a point in your life when the pain is moderate with intermittent points of severe and acute. In which case you find that you are coping well. You can work and maybe even have a career. Maybe not the job or career you want to have but you can do it. You can have a life and by that, I mean a generally good quality of life that permits some social activity, some activity with co-workers, friends, family and loved ones. Some hobbies and pleasurable leisure activities. Within moderation and within limitations. Never what you could have, never what you want to have. But some. Enough to allow a certain level of quality of life. Enough that you have a good capacity to cope. Enough that you know you are coping.
Then a tipping point.
You may not even know right away that you have reached it. You certainly will try to deny it. Because you are coping, right?
At this stage of the game, the pain is always severe and intermittently acute. Or more than that. You are not coping. You are barely pretending to cope. Yet likely you pretend to in order to hold onto your job, at least initially. In order to do so there goes all aspects of your quality of life. No social life. No energy or pain tolerance for interactions outside of what is necessary. This is survival mode. Not coping.
It is not likely anyone can maintain this for long. Although most of us struggle to do so for some time. Which is why so many other aspects of our quality of life are eradicated first. And all that remains are those core necessities. However, even those suffer. Finally, we struggle to work. And the stress of maintaining that and coming to the realization we cannot, can have a massive impact on us.
You think you can handle it, until one day you cannot. Then what do you do? You have to figure out how to get a handle on it again. And pain management, unfortunately, may not be an option. While I would love to have a way to treat my pain it is not something I can do. I have to tolerate it. Endure it. And that means in order to not be in survival mode where I wasn’t coping with it and often suicidal I had to consider my work situation. I could not consider any other aspect of my life. It was stripped bare already. I already had all the coping strategies one would expect from someone who had chronic pain for a very long duration. But the pain had exceeded them. Unless I get treatment to help with the pain then I am left in this severe/acute level on a daily basis that doesn’t permit any options. I explore anything that can help reduce the pain or suffering. And will continue to do so because anything can help with new coping strategies. But when the pain level remains as it is level of functionality remains low. And we sometimes have to acknowledge this.
It has been such a long time since my pain has been in that moderate range that it is really naive of me to believe it will be there again. I remember that time rather fondly really. There was pain. There were limitations. But I prevailed over them. I succeeded. I felt like I had some control over my chronic illness because while there were limitations I could work within them and still achieve goals. Then one day I hit a wall and I just never did recover from hitting that wall. It was just a slow decline from there and no effective treatment. I feel like I have just been really struggling to hold onto shreds of my existence from there on… and really failing in that. But I survived for a long time by making compromises and slicing pieces off and calling that coping. It isn’t. I had been coping. Then I wasn’t. From that point on it was just denial. However, in this world, you are expected to just be so stoic about it all. You are expected to work with the pain. I don’t know how they think you can have a life and do that. Maybe they don’t care. In the end, when the straws of pain break the camels back you don’t care either because then you don’t even care about surviving anymore. The horror of this story is that I found when I struggled with chronic pain my doctor did not have my back. When I said this pain is a massive problem my doctor did not have my back. When I went of leaves of absence due to the pain my doctor was more interested in getting me back to work than treating my pain. In the end, I realized people are more interested in the appearance of functionality than actual suffering. It is an actual horror story really. We can go from coping to not coping and no one bats an eye. Other than those that love us and for them it is equally painful. It seems like we are expected to suffer by others. Like temporary pain earns you recovery but chronic pain earns you a lifetime of punishment. We have to fight for our rights. For any treatment. For anyone to comprehend that pain is a disability. That pain has a profound impact. And I can’t even say that we can win that battle because any treatment is difficult and often minimal. And disability is a fight. And not working? Is just financial instability and guilt. However, we all must know the signs between coping and not coping. Because not coping comes with a heavy price and can be infinitely dangerous. I would much prefer some financial instability and barely coping to not coping.