I focus on the pain, the only thing that’s real

Image description: a cute little bee wearing a green hat, with the text "Your Illness does not make you a burden."  from the EMM, not Emma facebook page

Image description: a cute little bee wearing a green hat, with the text “Your Illness does not make you a burden.”

The one thing I wish I had know about chronic illness is how utterly hopeless it gets. I have never been a healthy person. I was born with a collapsed lung, so from day one, I was destined to a life of pain and disability. No one’s life comes with a manual or a handbook, but the one thing I wish I had known before watching things gradually getting worse was how hopeless things got. The one thing I wish I knew as I grew into, not grew out of, my disabilities is how incredibly bleak things get. There’s nothing in the world that can prepare you for this life. There’s nothing in the world that can get you ready for how dark things are. No one told me how horrible the depression was that went with chronic illness. No one told me how incredibly HARD it would be.

No one told me there would be days that I would want to die – not because I wanted to commit suicide, not because I had depression, but because it was the only end to the pain I could see. No one told me that there would be days where all my time would be spent crying, making phone calls, and sending emails – trying so desperately to get insurance to cover what I so horribly need. No one told me.

No one told me that I’d struggle with my faith. No one told me that I would see no hope. No light. No love. That I would feel so empty, so hopeless. There’s no words for the overwhelming emptiness and despair when you live in so much pain. When you throw every med at it, and you’re still not better. When a hope is dangled in front of you, like a carrot in front of a horse, but insurance cruelly yanks it away from you.

Image description: A puppy, with the text "You don't have to apologize for your illness. It's not your fault and you haven't done anything wrong."

Image description: A puppy, with the text “You don’t have to apologize for your illness. It’s not your fault and you haven’t done anything wrong.”

No one tells you that you feel at fault. That you feel you did something wrong to deserve this life. That you are a failure for dropping out of college due to medical reasons. No one tells you that some days, you wonder if you had made certain choices or done things differently, you won’t be this way.

No one tells you at first, it seems nice to sleep so much. But what people don’t realize is that it’s one extreme or the other. You sleep all the time, or you don’t sleep at all. They don’t realize that some days, you pee or shower. Literally. They don’t realize that sometimes, you get up the energy to walk to the bathroom, but then have to take a nap on the bathroom floor before you can shower. They don’t tell you that somedays, you walk back to your bedroom but you’re literally too tried to crawl back to bed, so you take a nap on the floor.

They don’t tell you that at first, it seems nice to have all the free time in the world. But you really don’t. Because some days, you’re too sick to move. Too sick to play a video game, too sick to watch a movie, too sick to even pick up your phone. Too sick to do the dishes, so you just throw them away rather then do them because you cannot cope or function.

They don’t tell you how you some days have to decide what food will taste the best coming back up. When you’re so hungry you’re crying, but so sick you can’t eat. There’s nothing that can prepare you for that. There’s nothing that can make you realize this is now your life. They don’t tell you some times you LITERALLY have to choose between one disease and the other to treat, because they don’t play nice together and the meds interact and could literally kill you before the disease does.

Above it all, no one tells you how lonely it is. How isolating. How it feels that no one understands. How it feels to be in so much pain that it hurts to even cry. To think. To be trapped inside your head, your body, your house. And that there is no cure.

But above it all, no one tells you that no cure does not mean there is no hope. No one tells you that because of this pain and suffering, you appreciate things that you never thought you would. Like actually putting on pants. Like actually sitting up. Like being able to sit outside barefoot, and feel the grass between your toes. They don’t tell you that you learn to live and adapt in ways you never thought possible. And that is a beautiful thing.

Note: The pictures came from the EMM, not Emma facebook page. Please click the photos to see her work! 🙂

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