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Questioning if I'm 'Sick Enough' as Someone With Chronic Illness

Usa people liking feelings weakness
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I live with rare neurological condition called acute hepatic porphyria and the fight I have with my body is constant. I don’t ever think I’m sick enough.

I will actively choose not to seek medical help, even when I am in the throes of a life-threatening attack. I imagine this idea of minimizing severe symptoms when you have a chronic condition like porphyria is not uncommon, although I’ve yet to meet another person in my community with the struggle.

Why is no one talking about this? Let’s back up and talk a little about this rare disease. Acute hepatic porphyria is an inherited metabolic disorder caused by a missing enzyme in the liver’s heme biosynthesis pathway; it affects approximately one out of 100,000 people in the United States.

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