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What You See and Don't See About the Woman in This Photo

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People are really quick in making up their own story for a picture, for people they see.

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

You see a young women happy at a beach. You would probably think this woman has a great vacation on one of the most beautiful places in the world. The sun is shining and the waves are moving to the sound of the wind. Lots of people dream about a beach like this.

Karina walking on the beach
Karina walking on the beach

Some people would get jealous and think this woman does not deserve a vacation like this. They would even judge this person because she isn’t working and says she is chronically disabled but still can go out.

I am the woman in this picture, and this day was one of the most beautiful days in my life.

Based on some people’s opinions, people like me with many conditions are supposed to stay in bed all day and feel miserable. Because that’s how we might imagine someone who is not able to work. Quickly we might decide that people fake their disease if they look healthy on the outside. If we stay in bed all day, we are called depressed; if we go out, we are called fakers. It is hard to stay positive around those opinions. Then there are pictures of me on a beach lots of people dream of, and there is no more empathy at all.

Let me tell you what you really see in this picture. You can see me, a woman who suffers from Ehlers-Danlos syndrome and many co-morbidites. A woman who fights for her life every single day. To be able to keep my strength, I need to have a stress-free day, which means every now and then my mind has to relax and see beautiful things. This is necessary so I can survive the never-ending fights. What you cannot know is that this one day when I try to live a normal life means five days of staying at home being severely exhausted and in pain. But this one day is worth every second. It is absolutely necessary to be able to enjoy things, to have a vacation from fighting. Those days do cost a lot of energy, but they give me a feeling of normality. Being able to pretend a normal life is worth a lot to me and weighs more than the pain and suffering after.

You cannot see that during the day when this picture was taken, my stomach cramped due to mast cell issues; I was not able to see a lot, thanks to my cervical spine instability; and I could not walk properly due to instabilities in most of my joints. But I was the happiest me in a long time.

What does this beach mean to me? This beach means freedom, it means independence, it means living a normal day. It is a place where my mind just stops thinking about all the problems I am facing. Listening to the waves, putting my feet in the cold water, hearing the birds singing and seeing the sun shining gives me more than anything else in the world. To see how strong and unpredictable the ocean is, it’s overwhelming so I can forget all worries for a short amount of time. And I believe this is exactly what chronically ill people need. A place to feel save, to feel free and to let go the heavy burden they usually bear on their shoulders.

The next time someone judges me because of a picture, I want everyone to really think about what it means to me. Do I maybe need this place to keep my spirits up? Do I sometimes feel like giving up and need a break? Do people with chronic disease not deserve a day outside?

The worst part is even if I know I need those days, I find myself asking if I really deserve it, if it’s better to stay at home just in case people see me. I do not want to be seen as happy just because I am afraid of being called a faker or a liar again. I am scared people will tell me I am not really sick because I am still able to enjoy a beautiful day. I even feel ashamed for still having the chance to see all those places. It hurts a lot to live a life with those judgments.

I am sitting between two chairs, the expectations of others and my own needs. I am struggling with what I need to stay strong and what other people think I should do. Our lives are hard enough without prejudices. I wish people would see this picture as what it is: My escape from being sick. My chance to survive. My best therapy.

Originally published: January 6, 2016
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