Chronic illness and perception of control

When you read the the previous post it sounds ideal. Having this resilience and positive coping strategies to fling out with any stressful situation. Dealing with negative emotions. Sounds awesome.

But from my experience coping is a process not an endpoint. I am quite aware of one very poignant fact: Chronic Illness is Unpredictable. If I find balance, at all, it is not sustainable. I get used to medications. I develop another complicated comorbid condition. My illness gets worse abruptly in a way that significantly impacts my life.

Yes, I cope with all of this. Yes, over the decades I have become more resilient, out of necessity. That doesn’t mean I do not need an adjustment period for adversity. I do. That doesn’t mean coping isn’t a process and one that isn’t extremely difficult sometimes on certain days, weeks, months or years- it Is. Or that external reality doesn’t impact me.

Do not focus on things we have no control over

This was always a hard lesson for me with chronic illness. I love to overthink and obsess about all these external factors I have absolutely no control over. All that thinking and worry goes nowhere and just adds a crapton of stress on me for absolutely no reason at all because I have no power to resolve these problems. I have no control over them.

An example is when I applied for short term leave, or long term leave, or appeals for these. Once you send in that paperwork, and your doctor does as well, you have no control over the insurance companies process or decision. Thinking about it and the consequences of that outcome prior to ever knowing the outcome drove me nuts. And that was a horrible thing to put myself through with the depression I was dealing with.

So I had to learn to understand the difference between problems I can solve and work on and problems that I cannot solve or should think about. And also those that are not even mine to Own, as in other peoples’ problems I was taking ownership of that was adding to my stress-load that I shouldn’t have been taking on.

That fragile balance

So as humans we need a healthy perception of control to function. And the more we have the better response to adversity we have. The more resiliency we have.

As someone with chronic pain and chronic illness we are keenly aware of our lack of control in various ways. The unpredictability of our own health which then impacts a whole lot of factors in our lives. There is no real stability or the illusion of stability. Even if you take the example of pain management. Say you are working and you are on a medication that enables you to sufficiently function in order to work. It seems like you have some sort of stability. Unless the pain gets worse. Unless on a random whim your doctor takes away that medication, which happens a Lot these days. And then Can you sustain work? And for how long? If not… there goes income stability. And that is just how it is.

The fragility of our sense of control can completely collapse like it did for me when I had no pain management and couldn’t function while trying to sustain work. I became hopeless without that perception of control. I fell into despair. A deep depression. If in any way I had even a sliver of hope that I could somehow manage that pain or Would in the future I could have maintained. But it had been so long, so very long without any change that I had completely lost any sense that would ever happen.

Or we can sort of alter our perception of control. So like I say I have no control over my pain, which is something I really do not control, but I have limited control over my mental and emotional reaction to that pain. Or the suffering manifested by the physical signal of pain. I say limited control because let’s face it, I am not all zen about the craptastic reality of chronic pain. But I do have a lot of coping strategies to help me cope in various ways that help me deal with all the mental and emotional fallout to pain. So we can slice up what we have control of. And what we do not have control of. And accept that fact- which can be damn hard to do. Or I have no control over the pain, my body, my symptoms but I do about how I react to that.

Just because we want, desire, need something doesn’t mean we can have it or achieve it when we have physical or mental limitations we have to consider. That doesn’t mean we can’t achieve goals at a different pace or in a different way- it just means we have to consider different things. And, yes, sometimes, we can’t achieve specific goals and we know it. And we are very aware of the things we have no control over.

And we are very aware our bodies are very unpredictable. That our lives could be turned upside down in moments if our bodies take a downturn. That is a sense of lack of control. We do not have control over this. And we know it. Sure we adjust to these changes and we are so very resilient. But, we are aware in this world there is so much we have very little control over.

I personally don’t think it is a negative thing to know I don’t have control over everything or much of anything. I get I need a basic healthy perception of control as a human for a healthy sense of self. But also that I get some things are just not as in control as people seem to think they are. And I have to deal with that as best that I can in the healthiest way that I can. Not worry about the things I can’t control for sure. Without ending up in that wild sense of feeling completely out of control of my life and utterly hopeless. It is a fine line.

Chronic illness and perception of control