Why I Took Photos of Myself When I Felt Terrible

two photos of girl side by side

On the left, my blood pressure has just bottomed out at a dangerously low 58/29. I was recovering from fainting and my whole body was tingling and numb. I was also struggling with full body tremors and full body flushing.

On the right, I was sitting on the floor due to a HR spiking to 192, and sitting brought it to 137, I was pre-syncope and my blood pressure was 142/112.

“If you were feeling so horrible, why did you take a picture of yourself?”

This is why. Not all illnesses are visible. This is what my daily struggle with dysautonomia/POTS/Ehlers-Danlos syndrome looks like. (These pictures weren’t taken on the same day.)

I never know what the next moment is going to be like. Am I going to faint when I sit up or stand up? Am I going to have a resting heart rate of 72 or 200? Am I going to be able to eat? Are my joints going to hurt so bad that the pain is so unbearable that I throw up? Is my blood pressure going to bottom out or spike too high?

The unpredictability of this disease has taken a huge toll on every aspect of my life and I can’t even remember what it’s like to not be sick. There is no cure, so I don’t know if I will ever know what it means to “feel good” again.

I do know that I’ve learned to appreciate every small accomplishment. Every hour I don’t faint is a blessing. Every night that I can go to sleep without being in excruciating pain is a victory. Every meal I eat without pain and intense nausea is a celebration.

This illness has stolen so much away from me, but it has also shown me that even the smallest victories can feel like the biggest ones.

“You can be in pain, yet you can see beauty, and that is what makes life so incredible.” — Claire Wineland

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