My condition is confusing and complicated and even I don’t know what’s happening most of the time. My energy and pain levels can change literally instantaneously. I never have any idea how I’m going to feel even from one minute to the next. I can’t tell you how many times I’ve woken up feeling amazing only to find myself sitting on the floor 10 minutes later because I suddenly lost the ability to stand.

In summation: my condition is very versatile.

I never feel good, but I feel varying levels of bad. Some days are neutral bad and some days are super bad. For like a month over the summer I even had a few days where I was just plain neutral.

One of the many, many downsides of this is that people will see me on a neutral-bad day and assume that that is my normal. They see me at school or church or work and they don’t understand that what they see is me at my absolute best. My best is painstakingly dragging myself out of the house. My best is only missing one day of school a week. My best is neutral-BAD.

I absolutely LOVE my good days, but my good days are by no means the definition of my condition. People don’t see me on the days that I don’t wake up or on the days I am in the hospital or days that I am crying in my room unable to even call for help because the noise will hurt too badly.

No one that I know truly understands what I’ve gone through. Even my beautiful, compassionate, empathetic mother, who was and continues to be my greatest supporter and biggest advocate, cannot identify with my journey.

This knowledge is lonely. I’m sure all of you have experienced something and wished for someone to understand your situation. That’s why books and quotes and music and words of any kind are so powerful. When you read or hear something that you resonate with, you feel less alone. You know that someone, somewhere, thinks the way you do.

When I am feeling sad or lonely or misunderstood (as every emo teen does), this is what makes me feel better:

No one can really understand my individual experience, but that’s okay, because I would never want someone to understand my experiences. I would never wish what I’ve gone through on anyone. I am glad that my family and friends are incapable of connecting with me in this way.

If you seek a perfect understanding of your experience, you will most likely not find it. Even if someone has experienced the exact same thing as you, they think and feel and act differently, and therefore it will have affected them differently.

As I said, I have yet to find someone that truly understands my situation. Instead of being frustrated with those that do not grasp the severity of my condition, I am trying to find power in my ability to explain it to them. I am learning to find beauty in this process. I have found that I have to meet people halfway, and that I can’t expect them to understand me until I explain myself to them.

I hope you all find power and beauty in your ability to communicate your experiences with others.

I want to find that power myself.

At the very least, it’s pretty fun to watch people’s faces when I tell them that my heart doesn’t work.

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