A few years ago, I told a friend about my desire to know my full medical history. I was one of many adoptees who felt a sense of shame as well as frustration for not knowing my birth and medical histories. It seemed as though the two were inextricably intertwined, like vines growing up a tree. I couldn’t tell where one stopped and the other began.
“Why would you want the details of your birth?” she asked. “I don’t know the details of mine and it doesn’t bother me a bit.”
This need that many adoptees have can be difficult for non-adopted people to identify with, but it is vital that adoptive parents, physicians, and mental health professionals be aware of it, for it is one more key to understanding the adopted child, adolescent, and adult. To an adoptee, no matter what her age, the cold, hard fact that she doesn’t know her birth or medical history can be a painful aspect of her existence.
Take Margo, an adoptee in her mid-thirties and the mother of two small children. On her last visit to the OB-GYN, a precancerous uterine condition was found which needed immediate attention. The doctor said that knowing her medical history was crucial.
Through an intermediary, Margo’s birth mother was contacted and informed about Margo’s condition. Even though the birth mother had been hostile in previous contacts, Margo hoped for the best in light of the emergency.
Much to her dismay, the birth mother refused to cooperate. “How could she be so uncaring?” Margo asked between sobs. “She’s withholding something from me that is so basic, so necessary for life. It’s my right to have this information. It is my life we’re talking about here. How could she do this to me and my children?”
Scenario number two. Marty, an adoptee in his mid-forties, had a seizure during a routine blood draw. When he awakened on a gurney in the emergency room and was informed of his medical condition, his first thought was “I wonder if there is a history of epilepsy in my birth family.”
A neurological workup was ordered and the MRI showed no significant results, yet Marty was plagued by fear. “Why did this happen to me? When will it happen again?”
Scenario number three. Harry, a graduate student, worked for more than eight years to obtain his birth records from the hospital where he was born. His psychiatrist, who was treating him for clinical depression, sent release of information letters twice, stating the importance of birth information for treatment as well as prognosis of his illness. Repeatedly the records administrator refused release, even though the probate judge had granted permission. Who knows why the administrator would have such power or choose to wield it?
The problem of not knowing also affects young children and their adoptive parents. Frankie’s mom was told by doctors when Frankie was eight that he would have to have hearing aids and glasses. “I hated having to sit in the front row at school,” Frankie lamented.
As Frankie grew older, the mysterious symptoms progressed. His legs grew long and he became knock-kneed. His tongue “got in the way” with his speech and he couldn’t say certain sounds. Frankie’s parents were beside themselves with worry.
The doctors kept saying that if they knew the birth family’s history, the condition would be easier to diagnose and treat. That experience prompted a search for the birth family that lasts to this day. Frankie is in his twenties now, confined to a wheelchair with a rare form of arthritis. Even though his parents obtained the best possible care for him as he matured, the specific prognosis was a mystery without the birth family’s history.
Another adoptive mother of a two-year-old girl commented on the value of the biological history she already had: “Knowing my daughter’s medical and birth history will be more and more important as the years go by. I have referred back to it several times. It gives great detail about the birth mother: her hair type, her weight, her height, when she started her period, whether or not she experienced cramping with her periods … all these things will be helpful for me in knowing what to expect in my daughter’s future.”
For a young adopted child, the reality of missing history naturally comes up during a visit with a new physician. When the doctor asks, “Is there any history of_________?” the young adoptee might nervously look at the floor and act embarrassed as his mother reveals that he was adopted. As the child matures, another hammer stroke hits the psyche whenever the question is asked. The effect can be cumulative.
Corinne Chilstrom, in Andrew, You Died Too Soon, tells of her son’s pain that led him to commit suicide just a few days after his medical exam for college. Corinne says, “What he [the physician] was unable to complete was Andrew’s medical history. Unknown—Adopted was scrawled across those blanks. It was the best he—or we—could do. There was no cure for that illness—the illness of lost identity. Andrew grieved over it. And died of it. To him it felt like a black hole.”
I mention the example of Andrew not to frighten you, but to advocate for adoptees who have the same need. Adoptee Connie Dawson says, “This need follows me around but also impacts my children. My grown children now mark their health history questionnaires in noticeable ways like ‘Mother adopted. No medical history,’ hoping to call attention to the need for such information to be avail-able. And if it were available when I was adopted, I would like to have contact with a birth family member so that information could be updated.”
Stephen, a thirty-one-year-old campus minister, says, “I am aware that I am different every time I fill out medical forms. It’s bad enough not knowing if high blood pressure, heart disease, cancer, or other conditions run in my biological family. To me, it’s cruel that doctors have not created forms that cater to adoptees. It’s not too much to ask insurance companies for a question that reads, ‘Are you aware of your medical history?’ If not, give me my dignity and honor my unique origin.”
When an adoptee is denied medical information, whether from a hospital, county court, or birth relative, he may feel like a naughty child who has just had his hands slapped, or an adult who has no rights whatsoever. In an expression of my own and fellow adoptees’ frustration, I wrote the following “Adoptee’s Bill of Rights.”
The Adoptees Bill of Rights
I have a right to feel confused.
Who wouldn’t? After all, I have had two sets of parents, one of which was shrouded in secrecy.
I have a right to fear abandonment and rejection.
After all, I was abandoned by the one I was most intimate with.
I have the right to acknowledge pain.
After all, I lost my closest relative at the youngest age possible.
I have the right to grieve.
After all, everyone else in society acknowledges strong emotions.
I have a right to express my emotions.
After all, they have been shut down ever since adoption day.
I have a right to ask for any information about my medical records.
After all, it is my body and my history and it affects my children and their children.
There are several ways that parents and professionals can help the adoptee find comfort if reminders of his past and the missing pieces of his biological history prove painful.
First of all, learn what the trigger points are for the adoptee in regard to medical history. Here are a few to get you started:
Medical exams (exams preceding going to school, enrolling in college, getting married). The adoptee is emotionally vulnerable at times of change, and being reminded, even in a small way, of his lack of knowledge about his history can become the “straw that broke the camel’s back.”
Medical crises. The adoptee’s mind often will turn to his birth family, wondering if “the disease ran in the family. Did they have cancer? What did they die of? How long did they live?
Blood typing at school. The adoptee may wonder what blood type both his birth mother and father have.
Illness. The adoptee may have a particular condition that might have been inherited from his birth family. In these situations, he is reminded once again that his part of the history is missing. He might feel as if he is letting members of his adoptive family down.
When parents and physicians are sensitive to the times in an adoptee’s life when missing medical history might be painful, they can help the child by acknowledging the struggle.
For the Parent:
Help your child move out of the “victim” mode by sharing the “Adoptee’s Bill of Rights.” Encourage him to talk about any of the thoughts and feelings expressed in the bill that he identifies with.
When it’s time for your child’s annual physical exam, say, “If I were adopted, I think physicals would be hard for me. They would remind me once again that I don’t know who my birth mother is. Do you ever think about that?”
Remind your child to be assertive and confident in his unique process as an adoptee. Encourage him to feel comfortable discussing his history, or lack thereof, in a frank manner when necessary.
There should be a question on the initial visit: “Were you adopted?” When the adoptee responds affirmatively, the physician should pursue the topic, realizing that it is a key issue in the adoptee’s physical and emotional health.
For the Therapist:
There should be a question during the intake interview: “Is there any history of adoption in your family?” The therapist might go on to say “Tell me about your story. How old were you when you were adopted? Where were you born? Do you talk about being adopted very often at home?”
The therapist could get down on the floor with the young child and ask him to draw a picture of his adoption on a large piece of paper, then ask the child to explain the drawing.
Who knows if not knowing his full biological history will be a painful issue for your child? It very well may not be. Just remember that it is for some. Being aware of the times that your child might be struggling will enable you to help him deal with his painful feelings.
Now that we’ve talked about how distressing it can be for some adoptees not to have their full medical history, we’re going to discuss a fear that many adoptees often have but are afraid to verbalize.