For a long time, I believed that the greatest challenge my daughter faced was her pain.I was wrong. The greatest challenge was that no one, including me, truly understood what she was going through, to the point of believing it was all in her head.
For years, my daughter accumulated unexplained symptoms. My wife accumulated research, medical appointments, and questions. As for me, I observed the situation through the eyes of a skeptic searching for rational explanations.
This difference in perspective created a growing divide within our relationship, to the point where it almost did not survive.
Everything Is Normal?
"You can barely stay on your feet? Yet neither your neurological exam nor your brain scan shows any abnormalities."
"You're constantly exhausted? Your sleep lab shows restless legs during the night. Here's a pill that should help."
"You keep experiencing episodes of dizziness and feeling unwell? Drink more water, eat more salt, exercise more. You'll see, you’ll get better."
"You hurt everywhere, all the time? Yet your bloodwork is completely normal. It's probably fibromyalgia."
These examples are simplified, but they accurately reflect what we experienced. At every appointment, the symptoms were very real, yet the test results kept coming back normal.
When symptoms persist while examinations reveal nothing obvious, an unspoken conclusion often begins to take hold: maybe it's not that serious. Maybe anxiety is playing a role. Maybe it's being exaggerated.
Maybe it's all in her head...
Looking back, I realize that this conclusion had not only taken hold among some of the healthcare professionals we consulted, it had also taken hold in me. And because I place great value on facts and evidence, that position seemed perfectly reasonable.
The tests were normal and the specialists could not find anything wrong. I had no convincing explanation, and I genuinely believed I was being rational.
What I had not yet realized was that the absence of an explanation is not proof of the absence of a problem.
A Crisis That Changed Everything
Over time, this situation created increasing tension within our relationship. My wife was convinced that something serious was happening. I believed she was searching for answers to problems that did not exist.
We both sincerely wanted to help our daughter, but we did not understand what was happening to her.
The breaking point came during a couples therapy session when I told my wife that I wanted to end our relationship. Our therapist helped us recognize something we had not fully understood: at the heart of our conflicts was our daughter's situation.
We were not simply disagreeing, we were living in two different realities.
A Change in Perspective
After that realization, I agreed to accompany my wife with our daughter to her medical appointments. I also committed to seriously learning about a condition my wife had suspected for quite some time: hypermobile Ehlers-Danlos syndrome, or hEDS.
What I discovered changed the way I saw things.
Attending medical appointments showed me how difficult it can be for someone to feel heard when their symptoms are not accompanied by obvious test results.
My research helped me understand that my daughter's many symptoms formed a coherent pattern: pain, fatigue, episodes of dizziness and faintness, injuries, and functional limitations.
What had previously seemed like a collection of unrelated problems was beginning to reveal a common thread.
The more I learned about hEDS, the more I discovered a complex condition that remains poorly understood, difficult to diagnose, and often recognized only after years of medical uncertainty.
I also realized that many of its associated conditions are frequently evaluated separately, when they should be considered part of the same clinical picture.
I had been missing the forest for the trees.
Is hEDS Really That Rare?
For a long time, I believed my daughter's case was exceptional. After all, many of the healthcare professionals we encountered knew little about hEDS, if they knew about it at all.
Some considered it so rare that they dismissed the possibility without even considering it.
Then my wife introduced me to patient communities: thousands of people with similar stories and similar journeys, years of doubt, minimized symptoms, and delayed diagnoses.
And above all, families searching for answers.
I thought I was dealing with an exception, but I discovered a reality far more common than I had imagined.
hEDS remains difficult to diagnose. No genetic marker has yet been identified, and many experts believe its true prevalence may be underestimated.
But beyond the numbers, one thing struck me:
The lack of recognition of patients' lived experiences seemed almost as universal as the symptoms themselves.
Validation Is Not a Diagnosis
One of the most important lessons this experience taught me is that validation and diagnosis are two very different things.
Validating someone does not mean concluding that they have a particular condition. It means recognizing that their experience is real. It means acknowledging that they deserve to be heard and taken seriously. It means approaching their condition with curiosity rather than dismissing it by default.
I cannot change the years during which my daughter suffered. I cannot change the mistakes in judgment that I made.
But I can recognize today that her suffering did not come solely from her symptoms. It also came from having to constantly convince others that those symptoms were real.
Why VALID?
Over time, one question kept coming up among family members and friends:
What is it exactly that your daughter has?
Every time someone asked, I struggled to provide a simple answer. When I encountered healthcare professionals who knew little about hEDS, I wished I had a credible resource I could share.
Whenever I saw someone reduce this reality to anxiety or a psychological issue, I was reminded of how significant the lack of understanding can be.
I wished there were a place I could point people to: a place that explains, educates, and respects science while acknowledging the limits of our current knowledge. A place that speaks equally to patients, families, and healthcare professionals.
Many organizations and initiatives are already doing important work to improve understanding of hEDS and invisible illnesses. I did not create VALID to replace those resources, but to add another voice to this collective effort through an approach centered on validation and education.
VALID was born from a simple conviction:
Symptoms do not need to be visible to be real.
Welcome
Whether you are a patient, a parent, a spouse, a healthcare professional, a student, or simply someone who wants to learn more, I hope you will find useful, thoughtful, and accessible information here.
VALID does not exist to replace medical care. Nor does it exist to promote certainty where science is still searching for answers.
VALID exists to foster understanding. Because understanding leads to listening, and listening leads to validation.
And because invisible doesn't mean imaginary.