I was reading an article in The New Yorker about one woman’s experience being diagnosed with an autoimmune disease. She wrote, “My experience of feeling unwell for years before I got a diagnosis turns out to be typical.”
That line stopped me cold — because it was my experience, too. And it’s the experience of nearly every chronically ill person I know.
So why does it take years for doctors to take us seriously?
I once woke up from a full-blown colonoscopy — at twenty-four years old — and was told almost immediately that my symptoms were due to anxiety and “not having my life together.” Yes, a doctor said that to me — point blank.
Did it ever occur to him that maybe my life wasn’t together because my health was so poor I couldn’t work? Couldn’t maintain friendships? That I couldn’t function properly? Or was the answer always going to be the same: have you tried yoga?
I’ve heard countless stories like mine—chronic, widespread pain or complex symptoms dismissed with, “your labs are normal,” or “your scans look fine,” as if normal results are the end of the conversation rather than the beginning of deeper investigation.
If one test is “fine,” seek another. And another. Keep seeking until something shows up — because at least then, your suffering becomes legitimate.
Because we know our bodies — we’ve lived in them long enough to know when something is wrong.
So I fought — for referrals, for second opinions, for diagnoses. And that fight is exhausting. It’s all-consuming. It drains you mentally and physically, often while you’re already operating on empty.
Often, many of us secretly hope for abnormal results — not because we want to be sick, but because we want proof. Validation. An answer. Something tangible to confirm the pain isn’t imagined.
The cruel irony of chronic illness is that many conditions don’t show up clearly on scans — or don’t show up at all. Others have no cure, only symptom management. People used to laugh when I was upset over “normal” labs. But all I wanted was someone — anyone — to say, yes, something is wrong.
People don’t talk enough about how repeatedly being told you’re “fine” teaches you to doubt yourself, to swallow pain quietly, to grieve an answer you may never get. Over time, that grief doesn’t disappear — it settles. And eventually, it finds a voice.
And when we find our voice, we look for others who have been carrying the same weight.
If you’re still searching for answers, you’re not alone. There are more of us than you think, navigating appointments, appeals, referrals, and waiting rooms that blur together over time. If you’re tired, it’s okay to pause. Rest is not failure. But don’t let the pause turn into doubt.
Trust what your body is telling you. Keep records when your memory is foggy. Ask for clarification when something doesn’t make sense.
Seek support — in friends, in community, in people who don’t need convincing because they’ve lived it too. Let them remind you of what you already know on the days you start to forget.
Change doesn’t happen all at once.
It happens slowly, unevenly, and often quietly.
But it does happen when enough of us stop apologizing for our pain — when we stop allowing ourselves to be dismissed and minimized. It happens when enough of us believe we’re worth listening to.
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