Symone | Chronic Illness

What happens when a follow-up appointment turns into a hallway test of your instability, a room filled with laughter at your mobility aid?   It was supposed to be a simple follow-up appointment, the kind where you check in, adjust a plan, and maybe feel a little more supported walking out than you did walking in. I arrived already carrying weeks of instability in my body: dizziness, racing heart, near-fainting spells, the constant fear of losing consciousness at the wrong time. I wasn’t dramatic. I wasn’t hysterical. I was tired and looking for guidance. What I did not expect was to leave feeling humiliated. Living with unpredictable symptoms means I am always calculating risk. Every time I stand up, my heart pounds harder than it should. My vision can blur without warning, and there are moments when I can feel my body deciding whether it will stay upright or shut down. The mobility aid I brought with me isn’t a prop. It is prevention. It is the difference between walking carefully...

  ⚠️⚠️⚠️TW: SEXUAL ASSAULT⚠️⚠️⚠️ A survivor's truth, finally spoken out loud. ⚠️⚠️⚠️TW: SEXUAL ASSAULT⚠️⚠️⚠️ I’ve been carrying this story for a long time. Longer than I should have had to. And I’ve decided that today, it stops living only inside me. This is not easy to write. But easy was never the point. Every weekend, my brothers and I would make our way to our half-brother’s aunt’s house. My brothers and I are all half-siblings (all six of us), we all have different fathers, but we were family in the way that matters. Or so I thought. She had three older boys. almost in their twenties. And the two younger ones, they had decided something about me that I wouldn’t understand. They would come to me in my sleep. For a long time, I didn’t know. I would wake up with what I thought was drool on my face. Sometimes it was crusted. Sometimes it was fresh. I was a child(a teen, but still a child). I didn’t understand what was happening to my body in the night. Then came the night I found ...

  Motherhood, POTS, and the grief no one prepares you for. I never thought motherhood would look like this. I knew it would be exhausting, overwhelming, loud, sticky, and chaotic. I knew there would be sleepless nights and long days and moments where I questioned myself. What I did not expect was that the hardest part would be my own body. I did not expect that loving my child would sometimes mean calculating whether my heart could handle standing up long enough to make her lunch. I did not expect that something as simple as going outside on a warm day would require strategy, hydration planning, compression, and an exit plan in case I start to black out. Living with POTS is a ball buster. There’s no softer phrase for it. It is a condition that turns basic human function into endurance tests. Standing too long can feel like running a sprint. Showering can spike your heart rate high enough to make you sit down on the floor and wait for the room to stop spinning. Summer: the season ch...

    How being dismissed by a cardiologist delayed my POTS diagnosis and taught me the cost of not being believed. I came to this cardiologist seeking ongoing care for clear POTS (Postural Orthostatic Tachycardia Syndrome) symptoms. From the very beginning, I explicitly stated that my family and I suspected POTS. From the very beginning, I was dismissed. After testing, I was told by the echocardiogram technician, the nurse practitioner, and  Dr. Michael E. Merhige, MD , all in the same room on the same day, that my results were “normal.” During testing, I expressed dizziness and lightheadedness and said I wanted to stop. Instead of stopping, I was repeatedly asked  why . When my breathing became labored, the echo tech told me to “breathe slower,” as if I had conscious control over what was happening to my body. My heart rate reached  147 while speed walking . They also failed to document my heart rate upon standing, data that would have shown it was already eleva...