Medical History: Adoptees Fill in the Blanks

Every time we turn around, we hear about the importance of family medical history. Yet for adoptees, these facts are missing or at best incomplete.

A couple of recent  situations reminded me how little I know about my family medical history.

Leafing through Better Homes and Gardens on the subway, an article about heart disease caught my eye.

“When it comes to heart disease, what runs in your family matters—a lot,” the article began. “Studies show that if one of your parents had a heart attack or stroke, your own risk for these conditions can double, and having a brother or sister with the disease ups your chances of having a heart attack, too.”

I turned the page. Another article suggested talking to relatives about diseases that run in the family and then telling your doctor, who can use the information to recommend lifestyle  changes or screenings. “So grab a pen and paper and start interviewing Mom, Dad, Grandma, Grandpa, and everyone in between,” the article said.

Yeah, right. Like I can pick up the phone and get the scoop on family health conditions just like that. The writer is obviously not adopted.

On another day, sitting in an office in Manhattan, my doctor and I tried to calculate my lifetime risk of developing breast cancer. Lillian, my mother, died of breast cancer at the age of 48 and that’s why I made this appointment. I have no idea how old Lillian was when she was first diagnosed with the disease so I couldn’t answer my doctor’s question about age of onset. Hell, I didn’t know about my adoption until 11 years ago and didn’t know Lillian’s name until 2012. By the time I found out about her, Lillian had been gone for nearly 30 years.

I recalled hearing from a relative that Lillian had battled cancer for quite a while.  How long is quite a while? Let’s say my mother had the disease for seven years, I told my doctor.  She knew I was guessing and she wasn’t pleased. My doctor quizzed me about the other members of my family who had the disease. I don’t know, I don’t know, I said. My blood relatives are strangers to me.

I knew what my doctor was thinking: you should know your family history! I am adopted, I said, feeling compelled to defend my ignorance.

pic for medical history article
Courtesy of Cochrane

As we wrapped up our meeting, my doctor commented on how frustrating this lack of history must be for adopted people.

Yup, adoptees from the sealed records era run into these situations all the time. We don’t have family gossip stored in our memories because we never had a chance to talk with our biological kin. We can’t answer doctors’ questions with actual knowledge. We are clueless about our family histories.

In recent months, I’ve learned a few things about the health issues that run on my mother’s side of the family.  Lillian, in addition to breast cancer, struggled with alcohol and probably bipolar disorder. At least one of her brothers struggled with bipolar disorder, too. Lillian’s father, George, also had a drinking problem. My half-sister has diabetes and suffered a mild stroke some years ago.

What little I know about my mother and her relatives seems like a treasure chest of facts compared to what I have on my father and his family – absolutely nothing.

This problem is finally getting attention from the outside world. New Jersey lawmakers are considering legislation that would allow adoptees to gain access to their medical histories along with their original birth certificates.  I say it’s about time.

In the absence of information, I will do what I can to keep heart attacks, strokes and other bad stuff away.  Healthy genes, heart attack genes, mystery genes – whatever I inherited doesn’t have to dictate what’s going to strike me five, 10 or 20 years from now.

I try to take care of myself by making (mostly) healthy choices. Today I have a head cold. Part of me wants to take a nap, the other part of me thinks it’s time to get up, stretch my legs and have a glass of water with another shot of cold medicine.  It’s snowing and 27 degrees outside but a walk might do me good and get my mind off the things over which I have no control.

5 thoughts on “Medical History: Adoptees Fill in the Blanks

  1. Exactly spot on article. Finally, after a lifetime of having to give blank looks, and leave whole sections of medical history questionares blank, I have answers ! Now I know where at least half of my medical history is from. Since I found and met my birth mother, I know where the arthritis, heart and stroke issues may have come from. I feel it is critical for ALL 50 states to unseal adoption records, if for no other reason than to let adoptees know their family medical history. I feel any other action on the part of the state is cruel and basically inhumane. There are too many of us alive now who are “boomer” age, careening fast forward into middle age with no forewarning of what our health issues may become.

  2. Spot on! I get tired of having to guess. My wife’s medical history is known, but her family’s history is a complete blank. We can’t get to the records; non-identifying information is sketchy at best, her adoptive parents are both gone and her brothers are no help in this matter, 2 of the three are adopted as well.

    One of the family, a lawyer, has been unable to get the records opened, even for himself!

    Adoptees are still single islands in the middle of a vast ocean and nobody is aware of the other’s existence.

    My wife, not only an adoptee also placed a child for adoption–records are lost, sealed, destroyed. No help there.

    My wife could be 77% Black, 10% 15% white, 8% Asian… we have no idea. We assume Caucasian.

    She could be 30% Irish, 22 % American Indian, 80 % English… Judging only on her first and middle name at birth (Which is all we know), we assume Irish…

    Frustrating? That’s not the word for it. Demeaning, frustrating, unfair, unjust — all sealed records in the state of her birth.

    I have written to the Governor, State Senator, State Representative, US Senator, US Representative… NOTHING.

    A single pebble, tossed out to sea, vanishing… never to be seen again… It is sad that in this day of “PRIVACY” that we cannot know our own family history!

  3. Chuck, has your wife considered DNA testing? That would be one way for her to find out about her ethnic background. It is ridiculous that adoptees in the 21st century are clueless about the diseases that run in their families. It’s not right.

  4. Kevin, it’s so true. Doctors can’t recommend screenings to patients who have no information about their health histories. It’s unfair and stupid.

  5. Frustrating as it is and wrong, in the end it is more about how you look after yourself and what choices you make about your health, diet and exercise.

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