Meet Tommy, AIP warrior
"Some of the hardest moments of my journey have not only been the physical symptoms, but also the experience of trying to convince others that what I was going through was real."
-Tommy, AIP patient.
For much of my life, I've learned that being seen and being believed are not always the same thing.
I live with Acute Intermittent Porphyria (AIP), a rare disease that can cause severe pain and neurological symptoms. Many people have never heard of it, and some healthcare providers have never encountered it. Because of that, some of the hardest moments of my journey have not only been the physical symptoms, but also the experience of trying to convince others that what I was going through was real.
“There is a unique kind of loneliness that comes from being in severe pain and not being believed.”
-Tommy, AIP patient.
Too often, when I sought help during an attack, I wasn't met with understanding. I was met with suspicion.
I've been called a drug seeker.
I've had my symptoms questioned.
I've watched people make assumptions before hearing my story.
There is a unique kind of loneliness that comes from being in severe pain and not being believed.
Living with a rare disease has taught me how exhausting it can be to constantly explain yourself. To educate. To advocate. To prove that your symptoms are real. To keep speaking up even when you're tired.
Tommy at Porphyria Palooza 2024.
As a queer person, I have also experienced what it feels like when others think they know who you are before you've had the chance to tell your story. That experience helped me understand something important: everyone deserves to be treated with dignity, compassion, and respect.
Over the years, I have learned the importance of advocating for myself, finding providers who listen, and surrounding myself with people who believe me.
Today, I celebrate resilience.
I celebrate every time I spoke up for myself when it would have been easier to stay silent.
I celebrate every healthcare provider who took the time to listen.
I celebrate every person living with a rare disease who continues moving forward despite barriers to care.
Tommy and Mayra. They met each other at UPA’s Porphyria Palooza.
My story matters. The stories of people living with rare diseases matter.
“Every patient deserves to be seen, heard, and believed.”
Tommy’s story with AIP.
Want to share your story? Contact us at katri@porphyria.org
Meet others living with porphyria
