You know, but do you know? Long-term illnesses and degenerative conditions.

If asked, most people could easily define words like chronic, genetic, degenerative, or permanent. But few ever pause to consider what those words truly mean when applied to a living, breathing human being. It’s one thing to understand the vocabulary—it’s another to grasp the daily reality behind it.

When you're always sick, something strange begins to happen: people stop listening. Even when you're telling the truth, even when the symptoms are real, the compassion wears thin. Subconsciously, many people don’t want to look too closely at long-term illness—because it forces them to confront uncomfortable questions. Could this happen to me? And if it did, what would my life look like?

Well, it did happen to me. I have Myopathic Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome (POTS), and several other conditions that stem from the presence of these two. I tend not to speak about it unless someone specifically asks.

When people at work ask how I’m doing, I usually say, “I’m okay.” It’s the closest I can get to the truth without having to explain everything. “Okay” means I’m not doing well, but I’m here. It’s a balancing act—honest, but vague enough to avoid discomfort. But even this has started to be questioned. People don’t like that I always say “I’m okay.” They want to hear “Good” or “Fine.” But those words don’t reflect my reality, and I won't say them just to make someone else more comfortable.