When I first got sick, it was just all so vague. I hurt. Everywhere. All the time. My primary doc’s answers for years? Stress. Depression. Being a mom. You know….the usual BS. After years of that, neurological symptoms started, so he finally perked up and listened a little and I had hope! But, then came referral after referral after referral. I didn’t fit into any specialist’s cookie cutter practice and I became hugely discouraged. I was angry and I was giving up. I call this chronic illness limbo state “diagnosis purgatory“. It makes me laugh and I hope you at least get a little giggle.

I tried to be patient. I followed every instruction, took every test, tried every suggestion. I wanted to be the “good patient.” But as the months dragged on, I realized I was stuck in a system that didn’t really know what to do with people like me — people who are clearly unwell, but don’t fit neatly into any diagnosis code.

Every new specialist appointment brought a tiny spark of hope…and then eventually disappointment. They could always tell me what my illness wasn’t, but never what it was. And when I didn’t fit each doctor’s specialty, I was dismissed. That quiet dismissal gets under your skin. You start to doubt yourself. I’ve gaslit myself more times than I can count — telling myself maybe I’m overreacting, maybe it is just anxiety, maybe I am a hypochondriac. But deep down, I knew something wasn’t right.

Meanwhile the physical part was worsening — the pain, the exhaustion, the constant uncertainty about what your body will do next. But the emotional toll? That was its own kind of agony.

Diagnosis purgatory messes with your sense of reality. Every “normal” test result feels like a slap. Every new referral feels like another delay. You start living life in little chunks of waiting — three weeks until the next appointment, two more until test results. Everything is on hold while your world keeps shrinking around the pain.

It’s lonely, too. Without a diagnosis, you don’t even have a name for what’s happening to you. You can’t find a community or support group because you don’t know where you fit. You just keep saying, “I don’t know yet,” over and over, like some kind of mantra for surviving uncertainty.

Eventually, if you’re lucky, you get an answer. Sometimes it’s relief — validation that you weren’t imagining things. Other times it’s a gut punch. Either way, it’s something. A name. A truth. Proof that your body wasn’t lying. But even then, the scars from that waiting period don’t fade quickly. You remember the looks, the doubts, the way you had to convince people that your pain was real.

So if you’re still in that place — stuck in “diagnosis purgatory” — I see you. I know how heavy it is to wake up every day in a body that’s falling apart while everyone around you keeps saying you look fine. You’re not crazy. You’re not lazy. You’re not weak. You’re not a hypochondriac. You’re just surviving something incredibly hard in a world that doesn’t like uncertainty.

And most importantly….journal. Write everything down. Every twinge, every flare, every everything. I carry my notes to every appointment along with a file organizer full of my medical records and imaging disks. When you come in prepared and informed, they appreciate it and (at least in my experience…) take you more seriously. In fact, I now have a wonderful neurologist who makes copies of all of my notes and keeps them in my file. He rules.!

Hang in there. You are certainly not alone. I’ve found a ton of peace finding people like me in online support groups and subreddits. Highly recommend trying a few until you find one or three that feel like a safe, comfortably place for you.