A Tale of Two (Adopted) Sisters

This is a tale of two sisters, both adopted at birth and 40-something now. We are both actively concerned about our health, and wish we had a family health history to help guide our choices in life and healthcare. We’ve had very different experiences with the healthcare system. My sister, “Jada” has had four surgeries, severe allergies, chronic pain, and problems with her joints and ovaries since she was a teenager. Other than having my wisdom teeth removed, and as of yet, I haven’t had any surgeries, long-term debilitating pains or allergies. Therefore, she has had many more interactions with the medical system than I have. We have differing opinions on how much knowing our family health history would substantially and positively affect our medical care. My sister thinks that knowing her family health history “would make all the difference in the world.” While I think that knowing one’s family health history would be useful, I am not so sure it would affect my healthcare to such a large extent.

Our disparate levels of distress by a lack of family health history evoke a fundamental existential question for anyone adopted at a young age: how do you reconcile the fact that you do not know your family health history? Do you assume that you might have every disease and malady, and want to be tested for as many as possible, just in case? Or do you not worry about what you don’t know, and take a “what you don’t know can’t hurt you” approach to your health care? Or do you aim to reconcile your thoughts somewhere in the middle of these two positions?

My sister and I seem to have, unintentionally, chosen dichotomous positions to this existential question. Jada worries she might have every disease of which she hears, has no fears of over-testing, and wants as many tests as possible. She “wishes there were more tests that they would give her to check things out.” I want as little medical treatment and intervention in my life as possible.

I have definitely experienced what I consider over-testing because of a lack of family history. I feel I have been pressured into tests by physicians that wanted the tests taken “just in case”, with an attitude of “why not?” Cynically, I have sometimes thought they wanted me to take a test mostly for the additional money they would receive. I have experienced one false positive, which was upsetting, and made me lose sleep and worry unnecessarily. I feel I wasted money and wasted time on these tests, as I “felt healthy” and never thought or felt that what I was being tested for was a potential problem.

While I feel I have been over-tested to my detriment because of my lack of family health information, my sister’s opinion and her experience has been the opposite. She wants as many tests as possible, and is not at all bothered by any extra time or money spent on the medical tests she has received. She was not overly distressed by the false positive result she received once on a mammogram.

In fact, believing she was “being proactive,” Jada wanted to have a colonoscopy at 46. She has a female friend whose father had colon cancer at a young age, and her friend was able to simply call her physician and get a colonoscopy test at age 45. Jada was dismayed to find that her insurance would not cover this procedure, as she had no severe distress symptoms and no family history to back up a colonoscopy being recommended and covered for someone so young. Jada felt she was “denied” that test, and it is unjust that the insurance company would not cover it. She believes that their policy discriminates against her as an adoptee: “Biggest thing, I would like to get tested and get it covered.” She is still upset that she has to wait a few more years, until she is 50, for insurance to cover the procedure.

Jada wanted the colonoscopy at 46 because she “wanted to...