When Chronic Illness Makes You Feel Like You're on an Alien Planet

I am an alien. This planet ceased to be my home once I got sick eight years ago. I live on a planet full of people who do not understand me. The problem is, how are you to understand, if I look like any person who lives next door? How can you understand my “painsomnia” and fear about how I will live, because my pain medications are being taken away? It is impossible to understand if the only part that you ever see of me is my appearance. I can tell you about the awful burning pain I’m in that kept me up last night, but if you only judge me based on my appearance, how can you ever understand?

I could sit down with you and give you a list of all my diagnoses and tell you about the ones I am still searching to find. We could talk about how much I know about my illnesses, probably even more than my doctors do, but that would just sail right over your head. I could describe all my symptoms and talk excitedly about new research that’s being done into my conditions, but would you believe me? Would you care? All you get to see when we are together is what I look like on the outside and that won’t tell the story.

My words, my descriptions, are all I have to help you understand. You may be a relative, a neighbor, a coworker, or a friend. So here I will take you on a journey to hopefully give you some insight. To describe to you what living with chronic illness is like.

Imagine that you are somehow able to travel to an alien planet. Things would be so much different than your current reality, correct? Let’s say that everyone in that planet wears a spacesuit, because the air is too toxic to breathe. Well of course you are wearing a spacesuit, because of the same need for oxygen. So, everyone looks pretty similar. When you land, you are mistaken for a citizen of the planet. They put you right to work.

On this planet, however, the gravity is much more than that of earth, so it is very difficult for you to walk. Very difficult for you to do anything in fact. The other aliens don’t know this. All they see is someone who is wearing a spacesuit like them, but is “lazy.” Someone who can’t keep up. This misconception of you makes them not want to be near you. No one wants to be friends with you. No matter how many times you try to tell these aliens that it’s hard for you, they don’t understand, because all they can see is your spacesuit.

Would that not be so frustrating? So difficult? Would you not feel alone, ostracized and maybe even a bit “crazy?” You can’t take off your spacesuit and there is nothing to visually show the other aliens how the gravity affects you. You are all alone, fighting an uphill battle. It is all too real for you, but because no one can see, no one will believe.

This is what living with chronic illness is like. Because we look “normal,” no one wants to help us. We are left to our own devices to deal with something that we have no idea what to do with. Friends and family may leave us. Some think we are just “attention-seekers.” Our own doctors don’t always believe what we are telling them. Just like living on that alien planet, we may feel all alone here, all because we look like everyone else.

If you are reading this today, please take a moment to recognize the often silent struggles we go through. Next time you see or hear someone with chronic illness, maybe just stop long enough to put yourself in their shoes (or spacesuit so to speak). Please help us by not looking the other way.