The Weight of the Unknown: Adoptees and the Search for Medical History

The Weight of the Unknown: Adoptees and the Search for Medical HistoryA health scare is never something we wish for, yet it can force us to confront realities we’ve spent years avoiding. For adoptees, medical history—or the lack of it—adds an extra layer of complexity to an already stressful situation.

For years, I dreaded the start of any doctor’s appointment. Whether it was the nurse taking vitals, the nurse practitioner reviewing my chart, or the doctor themselves, the dreaded question would always come: "Tell me about your medical history." It didn’t matter how many times I had written “N/A,” “Adopted,” or even “I don’t know” on the intake forms. They always asked.

I didn’t know it. Never knew it.

And even when I finally worked up the nerve to request my non-identifying medical information, when I saved the money to pay the fees (because of course, this information isn’t free), the response I received was vague at best: "Parents' health—Good." What does that even mean? “Good” in their twenties? “Good” with no known conditions? “Good” with no context about family history? That single word--Good—was supposed to serve as my family medical record.

The Complicated Reality of ReunionWhen reunion came, I thought medical clarity would finally come with it. I was wrong. Finding biological family does not automatically mean access to answers—especially medical ones. There are so many barriers:

• The passage of time: Some relatives have passed on, taking their health history with them.
• Family silence: Not everyone in the family is open about their health.
• The emotional toll: Learning about family medical history is overwhelming—especially when you realize that history now applies to you.

And that last part? That’s the kicker.

When you grow up without medical history, you live in a space of not knowing. And while that space is frustrating, there is a strange comfort in it. But once you do get access to information, it can feel like you’ve been hit with a truck. Suddenly, you’re looking at reports, conditions, and illnesses from people you’ve never met—people whose DNA is now an insight into your future health.

It’s a lot to process.

From the Unknown to the Unwanted: Internalizing the InformationThere is an odd reality in going from having no medical history to suddenly having too much.
For years, I didn’t know. And now? Now, I almost wish I didn’t. The weight of knowing is heavier than I expected. Suddenly, I’m looking at risks, probabilities, and trends that impact me—and, more importantly, my children. Because as much as I might struggle with this newfound knowledge, I know that the responsible thing is to document it, process it, and pass it on.

For them.
Because I remember every doctor’s visit for my daughters—how I could only give them half of their medical history. At least I had their dad’s side, but that didn’t make it any less painful to have to say, over and over again, “I don’t know.”
So now, I am working on a family medical chart. I am documenting what I have. I am inputting it into the doctor’s system. Because if I have to explain this history one more time, I want to be able to just pull up my notes and say, “Here. This is what I know.”

What Information Should Adoptees Gather?If you are an adoptee and have access to any medical information, here are the key details you should try to obtain:

1. Immediate Family Health History – Parents, grandparents, siblings (if known).
2. Genetic Conditions – Any hereditary diseases or conditions that run in the family.
3. Major Illnesses – Cancer, heart disease, diabetes, autoimmune diseases.
4. Mental Health History – Depression, anxiety, bipolar disorder, schizophrenia.
5. Lifestyle & Environmental Factors – Smoking, substance use, high-risk behaviors.
6. Causes of Death – Knowing what past family members died from can help identify health risks.
7. Reproductive & Pregnancy History – Issues related to pregnancy, miscarriages, fertility, or genetic conditions.

Tips for Processing Medical Information as an Adoptee

• Give yourself grace. Learning about your medical history can bring up intense emotions—fear, sadness, even anger. Allow yourself time to process it.
• Seek support. You don’t have to do this alone. Whether through therapy, an adoptee support group, or close friends, find a space to talk about your feelings.
• Document what you learn. Start a medical history document for yourself and your children (if applicable). Even if it’s incomplete, it’s better than nothing.
• Communicate with your doctor. Share what you know, but also explain what you don’t. They can help assess risks and guide preventative care.
• Understand that reunion doesn’t mean resolution. Finding biological family may provide some answers, but it doesn’t erase the years of unknowns. Healing is still a process.

The Lifelong Puzzle of AdoptionAs my friend Tom once told me, “Joi, I’m 17 years into my reunion, and we haven’t fully scratched the surface.”

That blew my mind. It also lifted the weight of expectation—because it reminded me that this is a journey.

Adoption is a lifelong puzzle. Medical history is just one of its many pieces.

And now, even as I try to wrap my mind around the health realities of people I never knew, I remind myself that knowledge—no matter how overwhelming—is power. Because for the first time, I can walk into a doctor’s office and say, "Here’s what I know."
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And that? That’s a step forward.

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