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What Living With Dysautonomia Is Like

Lots of people know that dysautonomia is defined as a dysfunction of the autonomic nervous system. They even know it causes symptoms such as tachycardia, fatigue, headaches and more.

What they don’t know is that dysautonomia is so much more than that.

Dysautonomia is watching as everything is stripped from you, everything you took for granted — the ability to: go to school, hang out with friends, stand, eat, think and more.

Dysautonomia is being terrified of going away from home, because you’re terrified you’re going to have a relapse in public.

Dysautonomia is waking up in the middle of the night grasping at your chest because your heart rate is stuck so high.

Dysautonomia is being in severe pain and going to the ER, only for the doctors to turn you away because they can’t do anything to ease your suffering.

Dysautonomia is breaking down in the middle of a doctor’s office because they cannot do anything to help you, because they either don’t know what it is, or they label you as “mental.”

Dysautonomia is wishing that doctors would put you in a medical coma just so you don’t have to experience the symptoms.

Dysautonomia is wondering if you’re going to make it to tomorrow.

Dysautonomia is not being able to lift your head out of bed because every time you try, you’re at risk for blacking out or fainting.

Dysautonomia is watching your friends go out and get jobs, go to college, etc while your schedule is filled with doctors appointments.

Dysautonomia is wanting answers so bad, that you would be thrilled to find something wrong in your blood work.

Dysautonomia is humiliation as your own family denies your illness.

Dysautonomia is unbelievable grief.

Dysautonomia is suicidal thoughts lingering in the back of your mind.

Dysautonomia is having people say: “you’re too young to be sick,” “just think positive,” and “you don’t look sick.”

Dysautonomia is staying up for hours trying to find answers to an endless puzzle.

Dysautonomia is having no cure and no approved treatments.

Dysautonomia is perpetual tiredness that sleep cannot fix.

Dysautonomia is high and low blood pressure, tachycardia, debilitating migraines, sensory overload, nausea, abdominal pain, adrenaline rushes, stroke and seizure symptoms, fainting, dehydration and more.

Dysautonomia is going to the ER a few times a month to get IV fluids.

Even after this list, dysautonomia is so much more. I would like to end with this:

Dysautonomia is hope. And hope is so much more.

Getty image by prezent

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