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What You Don't See Because of My Invisible Illness

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When you see me smiling, what you don’t see is how much pain I’m in.

When you see me at the store, what you don’t see is that I’ve used all my energy dragging myself there only because I’ve run out of food at home.

When you see me out with my friends, what you don’t see is that it will take me three days to recover.

When you see me circling the parking lot for a closer space, what you don’t see is that I physically cannot walk all the way across the parking lot that day.

When you see me out on a walk, what you don’t see is that hobbling around the block is the extent of my capabilities.

When you see me looking energetic and getting things done, what you don’t see is that this is the first good day I’ve had in weeks.

When you see me on vacation, what you don’t see is how many activities I had to forgo in order to have a little bit of fun.

When you notice that I’m a little quiet, what you don’t see is that I’m expending all my energy just being physically present.

When you see me at the doctor’s office, what you don’t see is that sometimes I practically live there.

When you see me looking tired, what you don’t see is that pain has kept me awake the last four nights in a row.

What you don’t see is that some days my pain levels are low and I can pretend I’m normal, but other days it’s all I can do to get up off the couch. I never know what kind of day it will be.

If I don’t look like I’m paying attention, what you don’t see is how the pain has taken over everything. What you don’t see is the guilt I live with every day.

When you talk about how anyone can do anything they want to do, what you don’t see is how much that hurts me. Because unlike you, I can’t do anything I want.

When you judge me for not doing enough, what you don’t see is that I’ve actually done too much.

What you don’t see is how physically, emotionally and spiritually draining having a chronic illness can be.

What you don’t see is that I have the same wants and desires as a healthy person.

What you don’t see is that I’m doing everything in my power to improve my health, it’s just not working.

Follow this journey on Chronic Mom.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Originally published: September 10, 2015
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