Living Without a Diagnosis
People ask me sometimes, "How did you manage for so long?"
The honest answer? I don't know.
When you're living with symptoms every single day, you don't really get to choose whether you're going to keep going. Life doesn't stop because you're waiting for a diagnosis. I was just trying to be a normal teenager. I wanted to go to school, hang out with my friends, cheer at games, study for tests, and eventually make it through college.
Instead, I was constantly trying to figure out how to do all of those things while feeling sick almost every day.
So...you just keep going. That doesn't mean it was easy. There were days when just getting out of bed felt like a win. Days when the headaches were so intense I couldn’t think straight. Days when I was so dizzy that even walking across a room felt like a lot
But because I didn't have a diagnosis, I also didn't have an explanation. I couldn't say, "I'm having a bad Chiari day." All I could say was, "I don't feel good."
And after a while, even saying that felt repetitive.
So I started adapting without really realizing it. I planned my days around how I felt. If I had a "good" day, I tried to get as much done as possible because I never knew what tomorrow would look like. I became really good at pushing through pain. Looking back, maybe too good. I learned which activities made my headaches worse. I figured out that bending over, straining, or moving too quickly could leave me feeling miserable. I carried pain medication everywhere.
I always tired to show up, but when I didn’t I carried a lot of guilt and found myself wondering if people even believed me. When you look okay on the outside, it's easy for people to assume you're okay. I can't really blame them. I probably would've thought the same thing before all of this.
But invisible illnesses have a way of making you feel lonely. People see the version of you that’s smiling, laughing, or sitting in class like everything is normal.
They don't see what it took to get there. They don't see the hours spent lying in a dark room afterward trying to recover.
In the middle of it all, my faith is what helped me keep going There were plenty of moments when I questioned why God wasn't giving me answers. I prayed for healing long before I ever prayed for surgery. Sometimes it felt like God was quiet.
But looking back, God was never absent.
He was teaching me to trust Him even when I didn't understand what He was doing.
Would I choose to go through those years again? Absolutely not.
But I can also see how they shaped me.
They taught me compassion.
They taught me perseverance.
They taught me how to advocate for myself.
And they taught me that my worth was never dependent on having an explanation that everyone else could understand.
If you're reading this and you're still waiting for answers, I want you to hear this: Just because you don't have a diagnosis yet doesn't mean your pain isn't real. You know your body better than anyone else.
Keep asking questions.
Keep advocating for yourself.
And don't let the absence of a diagnosis convince you that your story doesn't matter. Sometimes the longest part of the journey is simply waiting to be understood.
I know.
I've been there.
“The Lord is near the brokenhearted; he saves those crushed in spirit.” Psalm 34:18 (CSB)
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