“I’d Rather Be Dead Than Live Like This”

…and no, that doesn’t mean I’m suicidal!

There’s something many of us with Ehlers-Danlos Syndrome (EDS) feel but rarely say out loud:

“I’d rather be dead than live like this.”

Not because we’re suicidal.Not because we want to die.But because living in a body that constantly hurts, malfunctions, and isolates us can feel unbearable.

This isn’t a crisis.This is grief — deep, quiet, and chronically misunderstood.

💔 This Is What Grief Looks Like

We grieve the life we imagined.We grieve the trust we once had in our own bodies.We grieve the energy we can’t seem to reclaim, the plans we keep canceling, the version of ourselves that feels like a stranger.

And beyond that, we grieve how invisible it all is.

The outside world doesn’t see what it costs just to sit up, to eat, to speak without crying.We’re expected to perform health, while carrying pain silently — because talking about it too honestly gets us labeled.

We’re afraid.Afraid of being called dramatic.Afraid of being flagged as suicidal when we’re just being real.Afraid that telling the truth will cost us the little care or safety we have.

So we swallow it down.Or joke.Or guilt ourselves with the thought:

💭 “But I Should Be Grateful…”

We tell ourselves:

“At least I can walk.”“At least I don’t have cancer.”“At least I’m not in a wheelchair full-time.”“Other people have it worse.”

But this is guilt disguised as gratitude.

Because we can walk, but it hurts.Because we’re not dying, but we’re not really living either.Because we exist, but the fight to stay upright and functional is relentless.

You can be grateful and still be in despair.Gratitude doesn’t erase suffering. It coexists with it.And invalidating our own pain doesn’t make us stronger — it just makes us lonelier.