When Chronic Illness Makes You Feel Like You Have No Control

I’ve realized when you’re chronically ill, in addition to all of your health struggles you lose a lot of control over your own life. This presents itself in small ways in social situations where we are invited to something a week from today and we can’t really say yes — not because we don’t want to go. We definitely do. We can’t say yes because we don’t know what our body is going to do to us a week from today. Honestly, we don’t really know what it’s going to do 45 seconds from now. It doesn’t matter if we do everything just right; our bodies are as temperamental as your average 2-year-old.

Of course that is the little stuff. Many of us struggle with household chores. I know I’m not alone in just skipping dinner because I simply didn’t have it in me to cook or even pour myself a bowl of cereal. Most of us can’t work — we did when we were healthy, but it was one of our many losses. This makes us struggle with our value. We often have to stare at our dirty houses because we physically can’t do anything about it. We struggle with terrible guilt of feeling like a burden on others. We try to explain this life to those around us — the loss, grief, depression, loss of self, loss of control and so much more, but people can’t really wrap their heads around it. They aren’t being mean; it’s just so far from their experience that it’s hard to relate. In most cases people get sick of our limitations and move on with their lives.

Although our houses do not look like this, it feels like they do in how overwhelming the smallest task seems.

None of this is in our control. There isn’t a single thing we can say or do “right” to change any unwanted outcomes. If we had control over our illness and pain then we wouldn’t be in this position, and we could go live a normal life. No counting spoons, pouring pills, waking in pain, making daily choices between things “normal” people don’t even think about like a having breakfast or doing your hair. We live our lives walking on a balancing beam, always trying to make sure you have enough meds in your system that your pain isn’t of control, but not so much you can’t think. Our body is in control, not us.

Something else is pulling the strings, and it has a strange sense of humor. So, what do we have control over? It feels like we don’t control anything, like we are just being dragged along on some version Mr. Toad’s Wild Ride, and it is different from fun.

However, we do have a secret super power.

The way I figure it, the one thing we truly control is our reaction to all of this. Everyone just hold back that groan a second. I’m not here to tell you a positive attitude will change everything. That’s a load of crap, and I’m not in the habit of pedaling lies.

When I say you can control your reaction, I’m not suggesting you’re a robot who can completely control every emotion. I mean it is possible to be mindful of the life we are living, how it is having an impact on us, and what we can do within our limitations to find joy. We fight grief, depression and in many cases suicidal thoughts and actions. So, even here, there is a fight, a really big one. I’m not discounting it at all. However, in the midst of all my depression, with multiple situations and issues swirling through my mind, I kept asking myself, “Yeah, but what can I do about it?” At first, it was a helpless, useless question where I had no power. Interestingly, over time, I actually started probing for an answer.

I have been doing the same things and getting the same results, and I’m not happy with them. I’m not less of a person because I got sick and I don’t deserve to be treated that way. Neither do any of you. However, I have tolerated being treated as such. Sure, I’m miserable, my body hurts, nothing is working right and I can’t keep my eyes open most of the time, but I’m absolutely in love with a mug I just got. It’s just the right size, shape and color. It’s awesome! Each morning I look forward to hot tea on my sore throat, in my new mug, all wrapped up in my blanket. Every morning for the briefest of moments, this makes me happy. I think a big part of taking back control is just making choices, even small ones and realizing they are yours. I want to make more choices and be mindful of my reactions so I can find joy, even in the dark.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.