Fearing the onset of serious brain rot, the other night I decided to switch up my usual entertainment choices.  Rather than watch such intellectually irredeemable fare as Adam Sandler’s new cinematic gem, Hubie Halloween, I instead watched a couple TED talks.  A talk by Swarthmore psychologist Barry Schwartz caught my eye.  Being a psychology buff, I knew Schwartz was famous for research that showed that the many options we Americans have to choose from cause a lot of anxiety.  (Anyone shop for toothpaste lately?)  So I figured, “what the hey?”  Maybe Professor Schwartz has something interesting to say.

Schwartz’s talk was titled, “What Role Does Luck Have in Your Life?”.  He claims that Americans believe in a just system people get what they deserve and that by this definition our system is just.  Schwartz argues that people hate the idea that some important things in life are due to luck when in fact that’s actually the case.  He uses the example of his own life to demonstrate how a series of fortuitous events have led to a successful 45-year career at Swarthmore and a strong 52-year marriage.  Schwartz doesn’t say he’s undeserving of these things but he thinks there are other people out there that are equally deserving who didn’t have the same opportunities he had.

Pulling yourself up by your bootstraps

Schwartz’s thinking runs counter to the classic American ethos that people make their own destinies.  Self-help books like The Secret tell people that thinking differently will change their lives regardless of their circumstances.  Some psychotherapists even ask their chronically ill patients, “why did you choose Condition X?” (Well, they were out of Hepatitis C so….)  What a bunch of hogwash!  Such thinking blames the victim when things don’t turn out well.  On the other hand, the “woe is me” approach to life is not very helpful either.  I believe in a middle ground, with both good luck and hard work needed to succeed at the game of life. 

We’re often quick to blame the victim when the causes of their condition are not obvious to us.  See systemic racism for reference.  The same goes for those with invisible illnesses, in which the patient suffers from physical complaints but looks normal.  These conditions mainly afflict women. Ignorance, sexism (as I point out in my blog post The Misdiagnosis of Women), lack of patience, or some combination of these too often prompt physicians, friends, and family members to chalk invisible illness sufferers’ woes up to anxiety or depression.  Invisible conditions typically lack good diagnostic criteria, physicians receive little if any training on them, and research funding is sparse.  Often, all we have to go on is what the patient tells us and apparently that’s not worth much on the open market.

Proceed with caution: gaslighting ahead

This topic is especially timely as hundreds of thousands of coronavirus survivors transition to life as so called long-haulers who live in a grey zone of mystery symptoms that persist long after the virus has disappeared.  A recent article in The Washington Post describes their plight: “They face doctors who don’t believe them; media that often ignore them; friends and family who don’t understand why they aren’t better; and a virus that, with each passing month, pushes them deeper into the unknown. Being a long-hauler means being ‘displaced,’ says Melanie Montano, 32, a New Jersey-based administrator for the Slack [long-hauler] group. ‘We’re not dead but we’re not living.’”

To paraphrase Ronald Reagan, “here we go again” as a deluge of newcomers enter the medical twilight territory already familiar to those suffering from Chronic Fatigue Syndrome/Myalgic Encephalitis (ME/CFS), connective tissue disorders, and a host of other hard-to-diagnose, hard-to-treat, invisible conditions. 

Can we first agree that there’s a real, physical problem that’s not in patients’ heads?  This is very doable as UK dermatologist, surgeon, and ME/CFS sufferer Dr. Nina Muirhead explains: “[The ME/CFS patient is] a person who has a normal life, normal ideas and expectations about their life, and within a few weeks or months can’t do anything like they normally can. They’re still the same person, they’re not suddenly depressed.  Nobody has ever come out of the illness and said it was because they were depressed or that they kind of made it up.”

When it comes to health, financial situation, etc. some people just have bad luck.  After all, life isn’t always fair.  I’d like to propose a definition of a just society that is starkly different from the one Professor Schwartz cited, a society in which everyone gets what they deserve.  I believe a truly just society is one that helps those who get what nobody deserves.  That first requires taking the time to really understand someone’s suffering rather than lazily ascribing it to a character flaw.