Holding Two Truths at Once

In my last entry, I glossed over how I was diagnosed. The truth is, that part comes with a measure of guilt.

Though, let’s be honest — genetic guilt probably goes hand in hand with genetic trauma. It shows up whether you invite it or not.

I’ve had my own share of pain over the years. But so has my daughter, and in many ways, hers has been worse. It took me a long time to understand that someone else having it worse doesn’t make your own struggles invalid. That lesson is hard enough on its own — but it changes shape entirely when it’s your child. And it doesn’t matter how grown that child is.

After seeing several specialists, one of her doctors suggested that nearly all of her symptoms aligned with Ehlers-Danlos syndrome. When she brought it up to me — and gently suggested that I might have it too — my immediate reaction was denial.

No, that couldn’t be it.

Yes, I had always been unusually flexible. Yes, I’d been called double-jointed my whole life. Yes, I could once put my legs behind my neck without much effort.

But still — no.

If I’m being honest, the resistance wasn’t really about the diagnosis itself. It was about what it might mean. Because if I had it, then I might have passed it on to her. And that thought landed hard.

As it happened, I already had a doctor’s appointment scheduled for a steroid injection in my knee. While they were getting everything ready, I mentioned my daughter’s appointment and what her doctor had said.

“You’re thinking you might have it too?” he asked.

“Well… I’ve always been flexible,” I said. “People used to call me double-jointed. I could do things like put my legs behind my neck.”

He gave a noncommittal “uh huh” and kept prepping my knee.

Then, as the nurse poured the cold antiseptic and I shifted my foot out of the way, he paused. Looked more closely.

My foot had rotated — far more than it should have.

He blinked and said, “Wow… it looks like you do have it.”

And just like that, the conversation changed.

I brought up my concern about the potential cardiac issues associated with EDS. He agreed it was worth checking and scheduled me for an echocardiogram.

When the results didn’t come back right away — and I was told he’d go over them with me at my next appointment a few days later — I had a feeling something wasn’t entirely routine.

The echo showed some calcification in a valve. Subclinical, he said — something that only shows up because we have the technology to see it this early. Nothing to treat right now, just something to monitor.

Not nothing. But not everything, either.

Meanwhile, my daughter returned to her doctor with my diagnosis — and received her own.

Our diagnoses, in a strange way, formed a kind of loop. Each one confirming the other.

Not long ago, my daughter asked me if I had ever really wanted to have children.

I told her the truth.

Growing up, I never dreamed about marriage or motherhood. That wasn’t the life I imagined for myself. And yet, I found myself there early. I’ve often thought that if I hadn’t gotten pregnant when I did, I might not have been able to at all.

But alongside that truth is another, harder one: I’ve struggled with guilt over the possibility that I passed this on to her. That, knowingly or not, I set her on a path of pain.

Is it fair to bring a child into the world with something like this?

It’s a question that doesn’t have a clean answer.

Because she also reminded me of something just as true — she still has the right to exist. Her life, with all its complications, is still hers. Still valid. Still meaningful.

Two things can be true at once. And learning to hold both of them is… complicated.

I know I need to work through the guilt. I know it doesn’t change anything, and it doesn’t help either of us.

But knowing that doesn’t make it easy.

It’s still a hard place to sit.