Meet Sarah, AIP Warrior
By Sarah Sisley Doutt-Nesmith
"I started to get severely ill and was hospitalized monthly for weeks at a time."
-Sarah, AIP patient.
I found myself questioning the very basics of life. With stressors from all angles, my purpose was lost beyond the mundanity of work life. I felt weighed down by responsibilities and even more so by my health. Through the cracks of that chaos, something inside began to shift.
Not all at once, but like a door I didn’t know even existed, my mind slowly crept open. I started to question everything, not with despair, but with curiosity. My thoughts began to stretch and reframe my pain as a teacher, my confusion as motivation. I have found meditation, tai chi, qigong, and other forms of energy work that help me manage my daily symptoms and be ready for each day with a fresh mindset and resilience.
Going back to the beginning, it started in 2013, when I started to get severely ill and was hospitalized monthly for weeks at a time. I would experience extreme abdominal pain, violent vomiting, neuropathy throughout my limbs, all mixed with mental confusion.
“For years I was told it was a PMS symptom or just anxiety.”
-Sarah, AIP patient.
For years I was told it was a PMS symptom or just anxiety. Doctors prescribed me a plethora of medications, which often did more harm than good. Then, about seven years ago, my younger sister did a genetic test that came back positive for porphyria. Once my family was notified, I immediately went to the same doctor to have the tests run. Once the tests came back and showed signs of porphyria, doctors attempted to use hemin as treatment during a hospital admission.
After that infusion, I amazingly felt like I was back to normal. Suffering for so many years caused me to genuinely appreciate a healthy baseline, and realize that the pain I was enduring was, in fact, not in my head.
For years after the initial diagnosis, mostly due to insurance complications, I had to wait until I was having a severe enough porphyria attack before I could admit myself to an ER, in hopes that a hematologist would be able to treat me with the proper Hemin infusion.
Sarah, sitting on the grass in a sunny park, smiling and enjoying a calm moment outdoors after her recovery.
Over the past year, I’ve had the opportunity to be treated by a new doctor. She has been absolutely fantastic in helping me feel healthier and live at a more “normal” baseline. The past six months have been the first time in over ten years that I haven’t been admitted to the hospital for weeks at a time.
I’m beyond grateful for the doctors who understand and actually listen, especially about a disease that is so rare and complicated. I hope that all those struggling with a misdiagnosis, or no diagnosis, will be able to find the same level of care that I finally have.
Living with porphyria has completely reshaped the way I approach life, physically, emotionally, and mentally. My symptoms are sometimes unpredictable, leaving me nauseous, in debilitating pain, and unable to function for hours or even days. Mornings are the hardest, and there are days I wake up too sick to even keep medications down. I’ve had to adapt every part of my life around managing this condition, tracking food, stress, sleep, and every environmental factor possible. Still, with all that effort, flares can come on suddenly and overpower anything I have planned.
“I hope that by telling the truth about what porphyria is really like, it helps others feel less alone.”
For years, my life revolved around survival, fighting for a diagnosis, navigating pain that felt invisible to others, and enduring a body that felt like it could only betray me. Despite all the years of suffering, I’m still here. I’m still trying to be better every day, in every way.
I want to share my experiences because I know that I’m not alone. People, especially women, suffer in silence and are told by medical professionals that their symptoms are not valid. I believe in the power of connection and compassion. I hope that by telling the truth about what porphyria is really like, it helps others feel less alone.
Sarah’s inspiring story.
Want to share your story? Contact us at katri@porphyria.org
Meet others living with porphyria
