"Words we carry" - A Collection of Patient Voices

These are the words we carry with us - sentences that cracked us open, gave us language for the pain, or reminded us we’re not alone. All from real people, just like you.

"For most of my life, I was the picture of health. I knew doctors as friendly faces at yearly

checkups, not as puzzle-solvers trying to decipher the language of my body. If I could

whisper to my younger self now, I wouldn’t scare her with what was coming—but I would

tell her to hold on tight." - (Noelle's journey with FND)

"Being removed from ‘normalcy’ is incredibly jarring and I felt left out of a lot of things for a long time because I couldn’t go out to eat or I was too fatigued or I couldn’t leave my bathroom. I felt tied to my house and like I lost my life." - (A life consumed by Crohn's disease)

"Looking back, I wish I could give my younger self a hug and tell her to keep advocating for herself, even when it’s beyond difficult. It only takes one medical professional to believe you in order to get on the right track" - (Brittany's story with POTS, EDS, Gastroparesis, and more)

" Now, I choose to see life with a glass-half-full mindset. While I still have challenges, I focus on everything I can do rather than what I can’t. Looking back, I’m proud of the strength I found in myself during my hardest moments—and even more excited for the future ahead." -  (Jordan's story with Rheumatoid Arthritis)

" The lack of understanding can be isolating, and it often feels like I have to keep proving how much this affects me." - (Romi's story navigating a childhood with chronic migraines) "The diagnosis was a relief—it felt validating, and it was the first time my mom truly believed me and my symptoms. But I had no idea this was only the beginning." - (Breanna's story battling CRPS, FND, AMPS and more) "I decided to dedicate my life and purpose to healing because my disease had already taken my hips from me- I will not let it take my heart or kidneys _or any other organ in my body" -(Sharan's journey and dealing with the ups + downs of chronic illness.)

" I felt as if I was dying and no one was listening." - (Brittany's story with POTS, EDS, Gastroparesis, and more)

"Never stop advocating for yourself. You know your body better than anyone else and you know when something is not right." - (Tomika Wheeler's journey with POTS/Dysautonomia)

"Through it all, I learned that while the road ahead was uncertain, my spirit remained unbroken, and I was determined to live life on my own terms." - (Aminah's story battling cancer and finding peace beyond treatment)

"My world flipped upside down. I kept asking, Why is this happening to me? I felt completely alone. No one my age could understand what I was going through. While my friends worried about exams and weekend plans, I was learning about medications, inflammation, and lifelong management of a disease I never saw coming. It was one of the loneliest times of my life." - (Jordan's story with Rheumatoid Arthritis)

"I learned that slowing down isn’t the same as giving up. That healing is not linear, and

neither is identity. That strength sometimes looks like surrender, and courage sometimes

sounds like “I don’t know, but I’m trying,” and “I need help.” My body may no longer function like it used to, but my voice has never been louder. My

purpose, never clearer."- (Noelle's journey with FND)

This collection is proof: even in pain, we create. We connect. We make meaning.

Every quote here came from someone who decided to speak up - someone like you.

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Clinical definitions will never capture the full weight of living with these conditions.

But we can.