A day in the life of a chronically ill person nobody sees
Porphyria Voices shares experiences, insights, and advice from the porphyria community. Discover valuable knowledge, foster connections, and join us in raising awareness to empower and unite our porphyria family.
By Geoff Diehl
Waking up exhausted, not “a little tired” the kind of exhaustion that makes getting out of bed feel like the first task of the day instead of the thing that happens before your day starts.
You’re already calculating before your feet hit the floor, how bad will the pain be today? How much energy do I have? What absolutely has to get done?
Realizing you can’t do everything. Not because you’re lazy or that you didn’t try hard enough, because our bodies have limits people can’t see.
Geoff at the hospital.
Choosing between tasks like they are mutually exclusive. If I shower I probably can’t cook later. If I go to the store I’ll probably need tomorrow to recover. If I work today my body will punish me tonight.
Cancelling plans you really wanted to keep. And feeling guilty about it every time. Even though you’ve been pushing yourself harder than people realize.
Looking completely fine on the outside while managing pain, nausea, fatigue, brain fog, dizziness or symptoms nobody else can see.
Explaining your illness in ways to make other people comfortable. Downplaying it, joking about it, or saying you’re okay because the real answer is too exhausting to explain.
Resting while fighting the voice in your head saying you should do more, even though your body is begging you to slow down.
Mourning the version of yourself that could do things without thinking, the spontaneity, the freedom, the energy.
And still waking up every day and trying again anyway, that part deserves more credit than most people will ever realize.
Stay strong my people.
For more information on acute intermittent porphyria and managing symptoms, visit Porphyria.org or contact us at info@porphyria.org. We are here to support you in your journey.
Geoff Diehl is an Acute Intermittent Porphyria (AIP) patient, UPA Ambassador, and advocate dedicated to supporting others living with porphyria. He moderates UPA's AHP Men ConnectUP, and is a valued member of the Porphyria Together community. Geoff also owns and operates a landscaping business in his hometown in Alaska.
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