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My 'Good Days' Do Not Invalidate My 'Bad Days' With Ehlers-Danlos

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two friends dressed up for prom

This picture. This year was my senior year and the picture above shows me and my friend before senior prom. We had so much fun. We acted somewhat ridiculous, but that’s who we are. By looking at this picture, you would never know anything was wrong. In this picture, I see two strong, healthy, beautiful teenagers enjoying themselves. I see two friends enjoying their final moments of high school together. I see a night full of lifelong memories.

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

But what about the part beneath the surface? Because what I don’t see in this picture is the bedridden freshman I was. I don’t see the reality of who I am or what I struggle with. You can’t see that I dislocated my hip while dancing at prom. You can’t see the nights I’ve had to say no to my friends because my body cannot handle hiking. You can’t see the countless hospital visits and doctor appointments and the medicines I have to take every single morning and evening. You can’t see the enormous amount of pain I deal with every day. You can’t see the vomiting and shaking while lying on the cold floor of a bathroom. But these things you can’t see are my daily reality.

But so is the smiling and dancing and fun you can see. So how do those two coexist? Well, my point is to show that my good days do not invalidate my bad days and vice versa. Just because my illnesses are invisible doesn’t mean they aren’t real. Just because I can have a great day and seem totally fine doesn’t mean I am miraculously healed. But also, just because I couldn’t go out that one day when the weather made me feel horrible doesn’t mean I can’t ever go out with friends. There is a balance.

The pain is part of my life. The fun is part of my life. Both of those are things I endure and enjoy daily. They don’t have to contradict each other or negate each other. Remember that sometimes I will have to say no, but sometimes I can say yes. I am blessed to have friends like this guy who went to prom with me who know that my life needs balance. They support me in my enjoyment and fun days. But they respect my decision to go home early or eat somewhere where I can actually get something. They know that they don’t have to fully understand to support me. And I am eternally grateful for the people in my life who carry me through life.

Don’t ever forget that people are more than what you see in that Instagram post. Don’t forget you aren’t alone. What we see on social media or on people’s good days is not all they are. Good days do not invalidate the bad days. The picture doesn’t invalidate the reality.

Originally published: May 10, 2017
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