Medical Stigma

A few years ago, I wrote a piece entitled, What If Cancer Had the Same Stigma as Behavioral Health Conditions? In it, I noted that fewer than half of the people with a behavioral health disorder receive treatment, in part because of the stigma around those diagnoses.[1]

One of the comments made in response to the piece was that cancer does have stigma, and I was reminded of this during the recent controversy about the Secretary of Defense concealing his treatment for prostate cancer. Some of the stigma around that particular diagnosis is specific to it, given that men are frequently raised to present themselves as strong, independent, and unfeeling, traditional male attributes that are undermined by a diagnosis of cancer. Even worse, prostate cancer and its treatment can negatively impact a man’s sexual functioning, adding shame to an already difficult situation.

But I know it isn’t just prostate cancer: there is significant stigma around a variety of medical conditions in the US.

Note: I’ve included a lot of links in this piece, since I found the linked articles interesting and also thought they might be a way to help others who have experienced medical stigma find support and healing.

Being shamed for a medical issue

My sleep disorders are neurological, not a mental health condition per se, but obviously the stigma and shame I feel around them is intense. Oddly, I didn’t think of it as medical stigma when I wrote about them recently.

And as I’ve been thinking about this post, it occurred to me that I faced a significant amount of medical stigma growing up. When I was a kid, I had a lisp (ICD 10 Diagnosis Code F80.0, Phonological disorder) and was pigeon toed (R26.9, Unspecified abnormalities of gait and mobility), for which I saw various physicians and received both speech and physical therapy. To make matters worse, I played the flute and wasn’t athletic, so I was bullied for being girlish, or worse. I’m sure that’s a major reason why I’m sensitive to toxic masculinity and tend to identify with social outsiders.

I have friends who were bullied for stuttering (F80.81, Childhood onset fluency disorder), and I suspect my friends with chronic medical conditions, such as kidney disease (N18), struggled as well, since people with chronic illnesses are often the target of bullies. There were a few kids I knew who were picked on for being quiet and withdrawn, and subsequently killed themselves, demonstrating the potentially fatal consequences of stigma and bullying.

Of course, children with disabilities, especially developmental disorders (F84), were ostracized and bullied by other kids. I didn’t think about that as stigma – I don’t think any of us did – much less medical stigma. They were just different and, at least when I was a kid, that seemed bad and shameful.

I also didn’t think of it as stigma or bullying when we picked on others for being overweight (E66.9, Obesity, unspecified), but I know that fatism (or weightism or sizeism) is one of the most common types of discrimination. Weight stigma, along with age stigma, is also one of the most difficult to change, and it still remains socially acceptable to many people.

Later, in junior high and high school, I developed acne (L70.9) and became a target for that. I bet everyone can easily think of at least five insults for people with acne.

The bullying around acne and obesity often includes an additional difficulty in that it’s frequently assumed the targets could eliminate the problem if they “just” changed their behavior, making it a character flaw or a sign of poor self-discipline. I heard dozens of suggestions for eliminating my acne, including from my family doctor and my parents: “Don’t touch your face,” “Wash your face at least 3 times a day,” “Avoid sweets.”

Similarly, ever since I began gaining weight after I turned 30, I’ve heard lots of advice for losing weight: “Skip dessert” (I rarely eat dessert), “Eat fruit instead of sweets” (I do), “Cut out alcohol” (I barely drink). My behavior didn’t change between the time I weighed 160 pounds and when I hit 260, in fact my diet is healthier now, but obviously my metabolism has changed. Of course, when I was skinny, I figured obesity was probably something people could control, although I never considered it a character flaw.

Another kind of stigma that makes no sense to me is that faced by people who use wheelchairs or other mobility devices. I used to travel with a coworker who used a wheelchair, and it was truly shocking to see the barriers and indignities he was subjected to.

“I’ve never told anyone at work”

Several of my friends with mental health or substance use disorders have confided in me that they’ve kept their diagnoses secret at work, which doesn’t surprise me.

But I’ve also had friends and coworkers tell me that they’ve hidden other diagnoses I wouldn’t have thought were stigmatized, including diabetes, migraines and MS. That brings me back to cancer, and I wonder how many coworkers hid a cancer diagnosis from me in the past.

A similar kind of silence surrounds women’s health of course: I’ve never heard a female coworker acknowledge their menstruation or PMS, and Period stigma is pervasive in our culture, especially in meanspirited jokes and accusations. The same kinds of issues occur with breastfeeding and menopause, not to mention breast, cervical, ovarian, and other cancers.

Of course, silence around a medical condition only works if it isn’t readily apparent, and non-apparent disabilities are frequently among the most stigmatized. That’s true about behavioral health disorders, as well as medical conditions that are defined primarily by subjective symptoms, such as fibromyalgia, chronic pain, lupus, and chronic fatigue syndrome. Since there aren’t medical tests for pain or fatigue, for example, others frequently question whether the person is “really” disabled; they may be accused of being lazy or just not wanting to work. People with subjective symptoms may face skepticism from others, being told “It’s all in your head” or “You just need to try harder.”

Understanding stigma

There are a wide range of theories about the causes of medical stigma. Illness or disease may be seen as reducing the fitness of the person in the competition that frequently defines modern life, the rat race or the climb up the ladder to success. Our single-minded focus on achievement can lead some people to dismiss others whom they see as less able to compete.

Sometimes, medical conditions are stigmatized because of fears of contagion; I remember sharing Thanksgiving dinner with a friend of a friend in the early 1980s because his family would have nothing to do with him following his diagnosis with AIDS.

Other times, as also occurs with AIDS, the stigma reflects a lack of knowledge, with myths or stereotypes contributing to fear. That process was obvious in the early stages of the pandemic, when people diagnosed with COVID-19 said they felt like they had the plague.

Fear of getting sick can devolve into a more irrational fear, like the fear many of us have around homeless people or someone diagnosed with mental illness. I have one friend who uses a wheelchair and tells me he sometimes feels like people worry they might “catch” his paraplegia just by looking him in the eyes. Another friend, who describes herself as morbidly obese, recently posted a quote on Facebook: “The fear of being fat is the fear of joining an underclass that you have so readily dismissed, looked down on, looked past, or found yourself grateful not to be a part of. It is a fear of being seen as slothful, gluttonous, greedy, unambitious, unwanted, and, worst of all, unlovable. Fat has largely been weaponized by straight-size people—the very people it seems to hurt most deeply. And ultimately, thin people are terrified of being treated the way they have so often seen fat people treated or even the way they’ve treated fat people themselves.”[2]

Often, the stigma is moralistic, as if the person had somehow chosen or invited their disability. This is frequently the case with mental health and substance use disorders, of course, but it also applies to disabilities where the person’s behavior is perceived as having caused their medical condition. This can be the case with heart disease, hypertension, and lung disease, for example. To be honest, I was completely unaware of stigma around those conditions, and I struggle to get my mind around it.

Overcoming stigma

As I look back at the times I’ve bought into stigma and treated others unfairly, it seems to me that I was seeing them as something less than fully human. I saw them as stereotypes defined by their medical conditions, as if that were all there was to them. I was treating them as an “it,” rather than a person with their own experiences, feelings, and lives.

In my experience, the opposite of objectifying others is empathy. When we’re empathic, we put ourselves in their position, vicariously sensing what they might be thinking or feeling. When I put myself in another’s place, I realize they are just as human as I am. When I’ve treated them badly, such as by stigmatizing them, I recognize how that might hurt, how it would hurt if someone else did that to me. That awareness makes me want to do better.

I also have to admit that empathy can be uncomfortable or even frightening. It can force me to face feelings I would rather avoid, like grief, anger, hopelessness, and fear. With people who have been diagnosed with a medical condition, it may remind me of my own frailty and mortality. It’s tough to be that vulnerable.

But the alternative is even worse, in my opinion. I believe we’re only fully alive when we’re vulnerable, present to other people as truly human. It can be easy to avoid that, and I personally have to make a conscious choice and effort to be that present, but we lose out – and we hurt others – when we choose to stay behind our defenses. Ultimately, stigma hurts both the person being stigmatized and the person stigmatizing them.

I’m acutely aware of how often I end my posts with a suggestion to remember that others are more than just our perceptions of them, to be curious about them, to accept them as they are, and to treat them as we would want to be treated ourselves. That’s a theme that recurs throughout my writing on resilience, neurodiversity, loneliness, belonging, and relationships.

And it’s a lesson I’m always learning.

?

?

For more information, visit https://daily.jstor.org/the-rise-of-disability-stigma/.

If you or someone you know needs help, call 988 for any mental health or substance use crisis.

You can also call 1-800-273-8255 for the?National Suicide Prevention Lifeline?or?text HOME to 741-741 for support from the?Crisis Text L

Follow me on LinkedIn.

This piece is not intended as medical or legal advice. Always speak with your medical provider before initiating a diet or exercise regimen or if you have medical questions. If you have legal questions, consult with an attorney.

This article represents my own opinions as a non-physician and does not reflect the opinions or positions of my employer.

[1] These statistics remain largely true today, based on the 2022 National Survey on Drug Use and Health, which estimated that 50.7% of adults with a mental illness received treatment and just 0.8% of adults with an addiction even sought treatment. (Substance Abuse and Mental Health Services Administration. (2023). Key substance use and mental health indicators in the United States: Results from the 2022 National Survey on Drug Use and Health (HHS Publication No. PEP23-07-01-006, NSDUH Series H-58). Center for Behavioral Health Statistics and Quality, Substance Abuse and Mental Health Services Administration. https://www.samhsa.gov/data/report/2022-nsduh-annual-national-report.)

[2] Gordon, Aubrey. “Aubrey Gordon: ‘Reclaiming the word 'fat' is about reclaiming our bodies – starting with the right to name them.” Glamour, January 9, 2023, https://www.glamourmagazine.co.uk/article/you-just-need-to-lose-weight-and-19-other-myths-about-fat-people-by-aubrey-gordon-extract (accessed 04/02/2024). I didn’t link this directly in the text of my post because the article, although excellent (in my opinion), includes some words that may offend some readers, including curse words.