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5 Things You Can’t Tell About My Chronic Illness From My Photo

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Here are the five things you can’t tell about my chronic illness from my photo in this story:

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

1. You can’t tell I’m really weak.

This may or may not be in my favor. It gives me the illusion of being normal, but at the same time, it gives the outside world a window into criticizing just how often my illness affects me on a daily basis. 

2. You can’t tell I’m wearing fake hair. 

Long story short, I worked a very stressful job, physically and emotionally, to the point where I literally pulled all of my hair out, which made my job even more stressful. Ironically, I worked at a hair salon.

woman wearing a head scarf

3. You can’t tell how difficult it is for me to get things done. 

I’m talking about walking down flights of stairs, preparing food and taking care of dog while making phone calls about my health. I’m talking about doing laundry, finishing a writing project and other endless things that need to get done while feeling fatigued and not having proper treatment. 

Planning and rearranging your entire life around a chronic illness is difficult. Whether it has to do with your job or family life, everything revivals around whether or not you feel too sick to get anything done, regardless of how much you would like to accomplish. 

4. You can’t tell I’m afraid. 

What I’m afraid of most is I’ll forget to put on my happy face on every morning, so the people around me will feel encouraged. Some days, my illness kicks me in the butt, and I don’t make any heroic attempts to hide it. My pain is revealed all over my face, my actions, my attitude — everything is plagued by my inability or lack of strength to fight back. As discouraging as this is for me, I know that it must also be discouraging for family to watch and not be able to do anything. 

5. And last but not least, you can’t tell my life story.

I’m talking every possible sign of a problem: the inability to gain weight since birth, gastroparesis problems since birth, hypermobility, crowded teeth and the inability to focus for long periods of time.

My entire childhood was a sign, and yet, medical professionals didn’t pick up on any of this despite annual appointments. One look at me now doesn’t define who I really am or what I was born with. Because I “never looked sick,” it somehow became a fact. The truth of the matter is that looks can be deceiving. 

We’re told by society what sick looks like, and by their standards, I am not sick. 

But facts and numbers, along with history, never lie like a picture can. The mask that is my face has walked through so many doctor’s offices and seen so many professionals, so that one of them would finally look at my whole history and say, “I think you might have Ehlers-Danlos syndrome.”

Originally published: January 10, 2017
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