Years Later, I’m Still Traumatized by My Pre-diagnosis Hospitalizations

I lived with my rare disease for 19 years before finding answers. The first time I was hospitalized for an acute hepatic porphyria (AHP) attack, I was 32 and undiagnosed.

Within 24 hours of admission, the floral arrangements began to arrive. Outpourings of generosity and concern came from all areas of my life — friends, family, co-workers, even a networking group I belonged to. My windowsill was filled with bundles of blooms in vibrant shades of yellow, orange, red, white, and pink. They were meant as a show of comfort, support, and love. Instead, each bouquet evoked pangs of guilt, shame, and judgment.

The longer I lay in the hospital bed, the stronger the pull on my conscience, until every time I looked in the mirror, I saw an impostor. It was a mistake I was there, some fluke of the universe. I was taking a bed away from people who were truly ill. Those I’d seen walking the halls with their IV stands or lying in bed watching daytime television, they were the ones who needed the care. I avoided looking at the windowsill.

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One night after visiting hours, I heaved my body out of bed. With my hospital-commissioned plastic thermos in one hand, I shuffled over to the bouquets. Brushing my cords out of the way, I spun the heavy glass vases around, checking for browning or wilted stems. I filled each with fresh water, and once satisfied, I called for my nurse. I asked her if anyone on the floor might like some flowers, and sure enough, there were some long-term patients she thought would love a little color in their rooms.

My initial hospitalization stands out in my mind as a time of vehement denial. Until that point I had thoroughly bought into the modern medical model, where first comes sick, next comes diagnosis, then treatment, and finally, recovery. This was a blip, a little bump to jump over. I was running on adrenaline, but even still, I didn’t have a reason to think I’d make a habit out of sleeping in hospitals.

After four hospitalizations in as many months, the bouquets dwindled to a trickle and then stopped completely. Not only had some providers stopped taking me seriously, it was increasingly complicated for my friends to be supportive and for my family to understand. I looked like I was making it all up, and I became less convinced anything was biologically wrong. I started doubting myself.

I didn’t want to go to the hospital, but my pain was unrelenting, and eventually paralysis would set in. Every time I sought medical help seemed to produce another check against me in my chart. Soon, the bogus diagnoses started to roll in. First, I was told it was an intestinal infection. Then I was deemed to have “functional abdominal pain.” Finally, and most emotionally tedious, was when a room of doctors circled my bed and informed me I had severe anxiety and borderline personality disorder. I was making it up.

All of the above became dark marks that shone up from the screen of my electronic health record, like beacons of warning anytime I showed up in the emergency room. Neon arrows, lit and flashing: Here she is — The Drug Seeker! The Drama Queen! She’s been here before, and she’s not to be trusted. 

Never do I remember a provider saying, “I hear you’re in pain, but I don’t know what’s wrong.” Acknowledging my suffering and admitting uncertainty would have been an act of compassion, words I would have clung to in those months. Instead, I heard that my test results were normal. Providers told me again and again, with such conviction, that nothing was biologically wrong with me. What if they were right? 

I lost trust in myself. My experience taught me self-advocacy was a waste of energy, an emotional drain of my limited resources. I’d show up in the emergency room, writhing in pain and lacking the confidence to speak up. I was traumatized.

Slowly, secretly, I resigned myself to the possibility it was all in my head. But like covering a flashlight with my fingers, doubt shone through in how I minimized my symptoms, how I fought with my body to be “normal.” This didn’t help me receive a diagnosis. I look back at those days and nights in a hospital bed, but I don’t know what I could’ve done differently.

This was only the beginning of my time in hospitals, because there’s no cure for AHP. When I show up in the emergency room, I still catch myself falling back on feelings of not deserving to feel better. It’s my shame talking. I try my best to let it go and to make room for love.

Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.