None Dare Call it Normal
What Is a Disease, Anyway?
The email landed in my box with an almost audible thud.
Dear Stella,
It’s time for your online follow-up visit to the Brain Health Registry!
Just like your first visit, you’ll be asked to update your information by answering questionnaires and re-taking brain tests.
Your participation is vital to furthering the study of brain diseases in your family, community and beyond.
You are helping to revolutionize brain health research and accelerate the search for treatments for brain disease.Who Decides?
Several years ago I signed up to perform what I thought was a public service for older persons. Since then I’ve been asked how my thinking is deteriorating every way to Sunday, with nary a question about the good stuff. Nothing about how my perspective on the history I’ve lived through contributes to understanding the present. Nothing about how many times I’ve made Queen Bee in the New York Times spelling game.
Nothing, tellingly, about how my next book is coming along. It’s all timed tests to remember flashing pictures and “tell me, which of these dangerous, expensive and marginally effective anti-dementia drugs are you taking?” They ask about each drug right in the clinical trial questionnaire. Imagine all ten thousand older participants in this study, having their internalized ageism triggered by the focus on the negative and then being offered dodgy solutions. Which begs the question: Is this really a clinical study, or is it a pharmaceutical ad with a veneer of medical authority?
We know that brains change with age. We know that some tasks, like remembering names, are harder while other functions, like synthesizing across subjects, get easier. After sixty we refocus from the trees to the forest. So, are these changes “brain disease?” Who gets to decide what is a disease, anyway? And who gets to decide which changes should be medicated?
Medical Sociology
It turns out there is a whole field called medical sociology that studies questions like these. Sociologists distinguish between the biological condition of having a disease and the social meaning of having an illness. Certainly there are real diseases, but there is also the meaning we make. For example, many people with seizure disorders are more affected by others’ reactions than by the seizures themselves.
Medical sociologists study conditions that are loaded with cultural significance that affects how physicians view and treat these conditions. On the one hand, there are stigmatized conditions, such as being fat, where overtreatment can be a problem. On the other hand, there are what sociologists call “contested illnesses,” such as fibromyalgia (or, at first, long COVID), for which it is difficult to get research funding.
Medical sociologists also look at the ways the internet has changed the isolating experience of having a medical condition into a group conversation. This communal experience in online groups, along with online access to medical journals, is shifting the power dynamic between physicians and patients–particularly patients with stigmatized or contested illnesses.
A third line of sociological research examines how medical knowledge can reinforce social inequality. For example, when women with PMS exhibit traits that are considered “unfeminine,” such as anger and aggression, this behavior is seen as evidence of an individual disorder rather than looking at social reasons why women are angry. Similarly, having a healthy fat body can be viewed medically as an illness rather than looking at systemic fatphobia.
Researchers in medical sociology are also examining the role of the pharmaceutical industry in shaping medical knowledge to sell products. The drug industry has a long history of influencing physicians through everything from free lunches to expensive vacations. Studies show that even a free slice of pizza can affect a doctor’s decisions.
Brain Health and Normal Aging
Which brings us back to the Brain Health Registry and the stigmatization of older age. The Framingham Study showed that the rate of dementia in the United States has declined by 20% per decade since the 1970s, and the average age at which it is diagnosed has risen from 80 to 85. Only 5% of persons aged 71 to 79 have dementia. The percentage of people in that age group who wonder if misplacing their keys means they have Alzheimer’s is likely much higher. And we know from Dr. Becca Levy’s studies that fears about aging contribute to poor health in older years. Combating ageism does not, however, add to the profits of the pharmaceutical industry.
The meaning we make of aging, like the meaning we make of disability and the meaning we make of body fat, is a mélange of scientific data (or lack of it) and societal bias. One thing is clear: Our bodies (and our lab results) change as we age. But which changes in our older years are normal? Which should be labeled as diseases and treated? Consider these examples.
“Pre-Diabetes:” Many people over 60 when tested are found to have slightly higher blood sugar. “Pre-diabetes” is a diagnosis that has important meaning or is a scam perpetrated by Big Pharma, depending on which article you read. The term “pre-diabetes” was coined by the American Diabetes Association, an organization rated as having an extreme level of conflicts of interest (ADA accepts donations of up to $27 million a year from drug companies). And when the ADA broadened its definition of pre-diabetes, so that many people who had been considered to have normal blood sugar were suddenly “pre-diabetic,” similar organizations in Europe did not follow suit. Another study showed that persons over sixty diagnosed as “pre-diabetic” seldom progress to diabetes. While some physicians continue to treat this condition with medication, other physicians call pre-diabetes a classic example of overmedicalization for the benefit of drug companies.
Low Thyroid: The level of thyroid production decreases with age. The point at which this decrease becomes a condition that should be medicated is not clear, with various researchers suggesting different test values and strategies for treatment. The ongoing conversation among researchers about where to draw the line for thyroid between normal aging and a disease state is thoughtful and measured. This contrasts sharply with the “pre-diabetes” controversy in one important way: Thyroid replacement is dirt cheap, and drug companies have little stake in the outcome.
Low Estrogen: Women’s estrogen production continues to decline as we age. From the Women’s Health Initiative (which scared the pants off physicians prescribing HRT back in 2002) right down to the May 2024 publication of a new observational study of ten million women over 65 (which documents a 19% lower mortality in women on HRT than in the control group), the subject of hormone replacement in women has been fraught. Some conditions seem to improve with HRT while others worsen, and which is which depends on which data you look at. In the new study, for example, deaths from breast cancer declined with HRT use–the opposite of the received wisdom. There is a lot riding on this discussion. About half of women past menopause have symptoms that could be treated with HRT. And although the cost to produce estradiol is low and there are no patents on this simple steroid, even generics companies continue to charge predatory prices. There is even more money at stake with this controversy than for “pre-diabetes.”
How do we, as medical consumers, make sense of this sometimes contradictory information? How do we decide for ourselves which changes in our own minds and bodies we consider normal, and which we choose to treat? Here are a few thoughts.
Follow the Money: If there is a lot of money behind a course of treatment (or even a diagnostic), ramp up your skepticism.
How does a condition affect you personally? You are not a statistic. What impact does a condition have on your quality of life? Is that changing over time? Can you track your own data at home (with an AppleWatch, a blood pressure cuff, an SpO2 meter, etc.)? Take your experience seriously when it’s time to discuss whether and how to treat.
Read up on what ails you. When you see your physician, be ready with questions.
Push back on ageism: Yours and your health care provider’s. Medical ageism and medical sexism are real. Even older female medical professionals can have internalized bias that affects care.
As for me, I’m mulling over whether to participate in the Brain Health Registry one more time. If I do, I’m going to take pictures of the questionnaire as they come onscreen to document the study’s negative bias.
Because when it comes to medical issues, there’s no substitute for data.
Or you can buy me a cup of tea. That’s lovely too.
For more reflections on vivid life in this next chapter, check out my latest book, Rock On: Power, Sex and Money after 60. Buy the e-book direct from Stella, here.
WOW, does this piece hit home. Because I have a sister with advanced Alzheimer's (and have had other family members with a whole menu of other forms of dementia) I, full of good intentions, signed up for a study investigating a new drug that could maybe, possibly, someday, diminish the disease symptoms or even prevent them. I won't go into the whole saga here (I've written about it elsewhere) but it was a frightening, demoralizing, and ultimately useless experience, one I would certainly not repeat. And yes, it was full of negativity bias on steroids. Thank you for writing this, because as much as I support research into all the neuro ailments associated with aging, I strongly advise caution.