What It’s Like to Be Betrayed by Your Own Body

Yes, you read that right. Our bodies are betraying us.

Sometimes we don’t even notice it anymore because this has become our new normal. But we’ve got bodies that aren’t doing what they’re supposed to do.

As an 18 year old girl, I am supposed to be going to school, participating in sports, going out with friends and going to parties. Instead, I’m stuck at home and hospitals. My body betrayed me by not giving me the energy to go out, by causing me pain, by not having a working stomach, by not repairing stuff that’s broken and by not doing 101 other things it should be doing. Normally, we don’t even think about everything our bodies do for us and how it gives us power, independence and freedom to go and do whatever we want.

Some of you with chronic illness may be able to work — some may not be able to and are housebound or bed bound. Whatever you’re able to do, you’ll probably always have to calculate the amount of energy it’ll take and be on the look out for triggers that may cause a flare of some sort. Wherever you are on the spectrum, you’ll likely always be aware of the limits your body has set.

Not having a functional body is extremely hard and challenging. For some of us, certain days feel like we’re imprisoned in our own bodies. Our minds (if there’s not too much brain fog) are awake and we know what we should be able to do, but we can’t because of pain, exhaustion and any other symptoms caused by defects in our bodies.

For some of us, it feels like we are trapped, often without a real key out of our prisons. We look back on other times where we were able to do more; on a time where we weren’t aware of the possibility that the greatest gift — our bodies — could turn into our very own prisons.

We often can’t do whatever we want, not without facing the consequences afterward. That makes me so frustrated. The freedom and innocence of acting on a whim are lost.

When people ask me what it’s like to be sick this is often, I tell them to envision your body failing you and being stuck. Because that’s what a lot of us are. We can’t swap bodies or return them with the receipt.

At the same time, I’m also grateful. Because although I haven’t had a lot of time to appreciate the gift of my body, I did have 15 years of making memories to look back on.

I hope while reading this, you’ve found some recognition. It’s often hard to know exactly how we’re feeling and then explain it to others. I’d love to hear about how it feels for you and how you explain it to other people.

Lots of love and strength,
Sara