Positive Thinking Run Amok
OK, that’s it! Enough with the climb-every-mountain drug commercials.
I’m fresh from viewing an ad for a targeted therapy that’s used to manage rheumatoid arthritis (RA). My goodness, that must be a fantastic drug – just look at those people scaling cliffs and zip lining across chasms. Folks with moderate-to-severe disease are “standing up to” their RA; heck, they’re taking RA on, (notwithstanding their pain, it would seem).
I sincerely hope that RA drug is as great as they’re saying it is, of course, and that the people who are taking it have been spared the lymphoma and other possible horrible side effects that these commercials coyly inform us “have occurred.”
But can we please take a step back from the feel-good zeitgeist of living with frequently crappy chronic illnesses? The MS world has its own champions, those can-do people who are depicted conquering their disease and doing things that many of us simply cannot do chiefly because, well, we have freakin’ MS!
This is tricky ground and I need to be careful here. I’m actually not gloomy or fatalistic by disposition, but I do live in the real world. However, I’m not the first to bemoan the tendency of some in MS circles to highlight the extraordinary among us. My favorite complaint? “Please quit with the… ‘I can run a marathon’ baloney” (Dorothy R. Dickhaus, Spring 2019).
That said, it’s very cool and inspirational if you’re actually able to run marathons. Keep on keepin’ on. I was a cross country runner back in the day. Sublime misery, as I recall ;).
I think that it’s actually worse in the cancer world, incidentally. There “warriors” are “battling” cancer to “defeat” the disease, if you believe the popular press depictions. The problem with this militaristic language? Cancer kills a lot of people without regard for their fighting spirit. It does so because it’s cancer, and sometimes it’s really aggressive.
The late Jimmie Holland, a psychiatrist at Memorial Sloan Kettering Cancer Center in New York City, wrote of the “tyranny of positive thinking” in this context:
“It is ironic that many negative, pessimistic people survive cancer, while others who believe positive attitudes will cure it do not. While members of the former group are stunned by their survival, those in the latter group are made to feel guilty or ashamed that they were not ‘up to’ beating an aggressive disease. This is unfair. I do not believe for an instant that people whose cancer progresses have a weaker spirit or character than anyone else.”
Analogously, a colleague in the geriatric medicine world told me that he struggles regularly with his AARP colleagues to get them to tone down depictions of really elderly people doing things on a physical level that most really old people simply don’t do–again, because they’re really old. Debilitation goes with the territory, sadly.
Most of us with MS are ordinary people doing ordinary things to manage the challenges of this disease. That doesn’t make for very exciting drug commercials, I guess. Maybe drug advertisers could feature more modest and realistic improvements in function attributable to their drugs? The small victories can matter just as much. And are so much more common.
In RA, that may be the ability to pick up a grandchild with a smile, not a grimace; in MS, maybe that’s the ability to go browsing for antiques with a loved one (I miss browsing for things; who stole all of the places to sit down?). These feel more honest to me, and I think they’d feel that way to others, too.
Breaking the cycle of exclusion: Embracing cultural competence in physical activity research for people with MS
Cultural competence in research involves considering the culture and diversity of a population.
An MS diagnosis in college didn’t stop Téa from cheering for the NFL.