The Wound of Being Misunderstood

Sometimes, the hardest moments of resilience fatigue don’t come from the medical system and a bad case of shingles I'm battling as we speak—they come from the people closest to us. Or at least, the people who should be closest to us.
I recently extended an invitation to my estranged mother. It wasn’t easy; it never is for people disbelieved that heir illness is all in their heads. But I was at my most healed point, and I thought, Maybe she’ll see me now. Maybe she’ll understand. EDS does not have me, I have EDS.
In years past, I had watched her extend compassion to other family members with EDS, mast cell disorders and POTS—extending kind words, comforting gestures, and simply the space to fall apart when things got too hard. To stay to help out for months when hospital stays were too enduring. I thought about all the times I could have used that same compassion. The times I was holding my body together with sheer willpower, juggling the crushing weight of pain and medical complexity, desperate for someone to step in and see me from my family.
So, I asked her on a recent visit (the first in years). I asked why she didn’t offer me the same grace she so easily gave to others. And her response?
"You hold it all together so well. I didn’t think you needed it."
Those words hit me like a punch to the chest. Did she intend to mention the title of my book? The comments weren’t intended to be cruel, but they carried a deep misunderstanding of who I am and what I’ve endured. In her eyes, my strength was a shield, an unspoken message that I was fine on my own. But what she didn’t see—what so many don’t see—is that holding it all together isn’t strength. It’s survival. It’s the mask I wear because falling apart feels like a luxury I can’t afford.
Hearing her say those words made me realize how much I’d been silently screaming for help, for validation, for the space to stop being the “strong one.” It wasn’t that I didn’t need compassion—it was that I had learned to live without expecting it. And when you’ve lived that way for long enough, you start to wonder if you even deserve it, or anything better.
That moment stayed with me, not just for the hurt it caused, but for the truth it revealed. Chronic illness forces so many of us into the role of the “strong one,” the one who always copes, always advocates, always fights. People assume we’re fine because we’ve gotten so good at hiding the cracks. They don’t see the cost of that strength, the way it drains us, isolates us, and leaves us longing for the compassion we so readily give to others.
But we deserve compassion, too. We deserve to be seen, not as the people who “hold it all together,” but as human beings who sometimes need to fall apart. And if the people in our lives can’t—or won’t—offer that to us, we have to learn to give it to ourselves.
Because being strong doesn’t mean never needing help. It doesn’t mean never asking for care. And it doesn’t mean you have to carry the world on your own.
If you’ve ever felt unseen, if you’ve ever been told you’re “so strong” as an excuse for not offering support, know this: Your strength is remarkable, but it doesn’t erase your need for compassion. You are allowed to need help. You are allowed to ask for care. You are allowed to stop holding it all together and simply be as you really are.
And above all, you are deserving of the same compassion you’ve spent your life giving to everyone else. Go ahead, here's your permission slip to let it all go if you need to. If only for a while to rest and recuperate. Warriors often rise again or they learn better boundaries with those who cannot meet their needs. Whichever way you fall, be gentle with yourself.
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