A Reminder for Perfectionists Living With Chronic Illness

I am a perfectionist.

I’m also chronically ill.

Those two traits don’t go together very well.

I used to be able to cater to the desire to have everything “just right.”

Not anymore. Not after my health went downhill. Still, I become frustrated with myself, my abilities, what I’ve done, and what I’ve failed to do. Nothing is “good enough” in my own eyes.

When pain screams louder and louder, everything else blurs into a haze. I forget important events and details. Words come out delayed or with a slight stutter, if I can get them to come out at all. Focusing for more than 30 seconds or a minute on one thing becomes downright impossible. It’s like my brain is a computer screen slowly going black. My mind seems to shut off, and I end up in survival mode. I simply cannot do what I used to — what I want to. I can’t live up to the idea in my head of how it was all supposed to work out.

What hurts is what my illnesses keep me from doing. I’ve been told that I’m doing well, that I should be proud of myself. Most days, I know it’s true, but it doesn’t feel that way. At all. My mind fixates on all what could’ve been or perhaps what even should’ve been.

I can’t tell you how much I want to be working right now. How much I want to feel productive. How I want to take charge, see a need and take care of it, volunteer more, do what I love — essentially, I want to just be “good enough” for once. Should I go on?

Chances are, if you’re still reading, you already know exactly what I’m talking about. You feel that same ache in your chest. You probably don’t have a mean bone in your body, but you have these strong feelings of jealousy that confuse you. You want to be happy for the healthy people’s successes, their careers, and their families. Instead, you find yourself constantly fighting bitterness and envy.

That could’ve been me, the thought occurs, That’s how my life should’ve gone.

These are the kind of thoughts that eat at our souls like acid. The kind of thoughts that keep you up at night, that cause you to break into tears in the middle of the grocery store, or suddenly be overwhelmed with crushing sadness while doing the very things you once loved to do.

These are the kind of thoughts — dare I say it — that are normal reactions to a life-changing illness of any kind.

Yes, normal.

Some spoonies seem to struggle with this more than others. For me, it’s been a constant battle. I don’t want to wallow in my emotions, but I also don’t want to shove them down until they explode. Where is the balance between the two? How can I grieve what I’ve lost while still living and enjoying what I can do?

See, that’s the thing. That’s the advice I’ve always heard:

“Focus on what you can do, not what you can’t.”

That is good advice, but as someone who is incredibly hard on themselves, I took it the wrong way. When I heard that, my mind filled in, “Do more work than your body can tolerate. Never ever talk about how hard life is, because no one wants to hear your whining.” Again, totally off. Not even close to what the original statement actually means.

My anxiety told me that acknowledging the pain I’ve gone through and continue to experience is selfish and wrong, but that’s not what that phrase means. It’s meant to be encouraging — to shift focus away from the negative over to the positive. That’s not a bad thing. In fact, it’s a good thing.

At the same time, I think we have to remember that no one can focus on the positive 24/7. Emotions are a part of life. They are not the enemy. They’re just a response to stress — whether positive or negative. You don’t have to “be an inspiration” or put on a brave smile all the time. It’s OK to admit it if you’re feeling kind of fragile. It’s OK to not be OK.

Think of it like this: the average person gets very irritable when they experience a minor inconvenience, and here you are, living with pain levels most people would be screaming at. Yet, you won’t give yourself permission to cry? To break down once in a while? To be frustrated? To grieve?

We’re holding ourselves to an impossible standard that no human can achieve. There is nothing wrong with embracing that, with having a good cry at the end of the day, and asking for help.

To all the perfectionists out there, please be kind to yourself. You’re fighting a very hard battle.