For women, there is often social expectation for us to dismiss our needs. It’s time to change that. Learn more about my 19-year journey to receiving an accurate diagnosis for my painful, raredisease. porphyria PainAwarenessMonth sponsored
I was only 14 years old when the first debilitating symptoms started in my stomach. The pain was like nothing I'd ever experienced before — like my insides were being carved out of me. MyI was in bed for weeks. I was a teenager; I had a lot of friends, I had an active social life, I was involved in school activities, and I wasn't leaving my bed.
Once I started working full-time in college, I had more frequent and severe attacks. By the time I got to graduate school five years later, I was in my late 20s, and I was almost always in an attack. The pain was severe, but I accepted it as my baseline. I wore my pain like a badge of honor and prided myself on being an overachiever. There is often a societal expectation for women to dismiss our needs.
It was incredibly dangerous that I wasn't seeking medical assistance, but I didn't know any better. I was frustrated that all the tests done so far had come back normal. Now I'm a full-time AIP patient and advocate for rare disease awareness. When I'm not advocating, the time I spend in our health system is astounding. I'm at doctor's appointments or in the hospital for hours each week. It's not the life I imagined for myself.
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