Hurts So Good by Suzy Weiss – Common Sense – SubStack
Why are so many young women suffering from invisible illnesses? Meet the girls in a world of pain.
In July 2019, Morgan Cooper was in a hospital bed when her gastroenterologist, psychiatrist, internist, a few nurses, and her mother marched into her room. She was 16, and for four years Morgan had been having stomach pains every time she ate. It had gotten worse in high school. The doctors had tested her for allergies and ulcerative colitis and gastroparesis. All negative.
She had recently been diagnosed with median arcuate ligament syndrome—MALS, a vascular condition—and she was set to be operated on by a surgeon in Atlanta. But first she needed to gain 25 pounds, which wasn’t going well. She was five foot seven, 98 pounds, and she was being fed through a tube placed in her stomach.
Cooper had lobbied for the tube after seeing other spoonies with it.
The spoonies were Cooper’s whole world. She had discovered them late in 2018, right after she set up a separate Instagram account dedicated to her medical struggles (@morgansfight, which is no longer active). She told me the account was for updating the family and friends who were always asking how she was doing. But a single tap on the MALS hashtag—or the one for any other illness—instantly revealed a world of chronic illness sufferers who track their many pains, tests, diagnoses, and doctors visits online.
These were the spoonies. They were mostly young women, and it seemed like there were thousands of them. (There aren’t strong spoonie stats available, but there are a ton of Facebook groups and pages—one with over 130,000 followers; nearly three million tagged Instagram posts; and videos garnering nearly 700 million views on TikTok. According to the CDC, six out of every ten Americans suffer from a chronic disease, with four in ten having two or more.)
Cooper created a YouTube channel, too. “I had one video just called ‘I’m Sick’ and the thumbnail was me crying,” she told me. “On Instagram, whenever I would post a picture of me looking sad, or with pills in my hand, or in a wheelchair, it would get like 2,000 likes.” Pictures of Cooper smiling would get about 100.
The spoonies made Cooper feel less alone, but the more time she spent online with them, the skinnier she got. In her journal, she’d written: I don’t know if I will live to see college. “It really felt true at the time,” she told me.
On that summer day in 2019, the doctors had come for her phone. Cooper’s medical team was having weekly meetings to discuss her care, and her mother had just sat in on one, so Cooper suspects that she brought it up. The only way to get better, they’d decided, was to cut Cooper off from the spoonies.