Follow the Money, Part Two: Why We Don't Give to Eating Disorders?

If you missed part one, you can access it here: https://marlowq.substack.com/p/eating-disorders-follow-the-money?r=8v4dw4

Last time I laid out where the money in this field actually goes. This time I want to sit with a harder question, which is why more of it doesn’t show up in the first place. Not from insurers. Not from legislators. Both are critical but right now I am talking about giving from the rest of us. The people who have money and could give it to eating disorder research and advocacy, and mostly don’t.

Before I get into it, I want to be clear about something: some donors in this field give real money, year after year, and never ask for their name on anything. A few are parents who lost a child and turned that grief into a program that’s still running. A few are clinicians quietly giving back a slice of what they charge. A few are people nobody’s ever heard of who just believe in the work and write the check anyway. None of what follows is about them. If anything, it’s about how much has been left on their shoulders because so few other people showed up next to them.

So why does almost everyone else stay out of it?

A few reasons keep coming up when I think about this honestly, and they overlap more than I’d like: shame, stigma, a belief that the money won’t do much good anyway, and something closer to plain greed.

Start with shame, because I think it gets talked about the least even though it might be doing the most damage. A lot of people who could give real money to this cause have also had an eating disorder themselves, or watched someone close to them nearly disappear into one. Most of them have spent years, sometimes their whole lives, keeping that quiet. Writing a large check to an eating disorder nonprofit isn’t like writing one to a children’s hospital or a disaster fund. Nobody wonders why you care about those. With this illness, people wonder. So a check either goes out anonymously, if it goes out at all, or it goes somewhere else entirely, somewhere the giver’s own history won’t be read into it.

Then there’s stigma, which works on other people instead of on yourself. This illness still gets treated like a lifestyle choice rather than a psychiatric one that kills people. Something closer to vanity or gluttony than to a disease that can shut down a heart. A phase certain girls go through when they have too much time and not enough real problems, which is its own kind of harm, because this illness has never cared who it shows up in. People who’d write a check for cancer research without blinking still hesitate here, often without noticing they’re doing it. It just doesn’t feel as urgent to them. It doesn’t feel like something that could touch anyone they know. It feels, somewhere under the surface, like something a person should have just been able to stop.

Stigma and bias sits underneath most of this and shapes who even gets recognized as sick. We live in a culture with a fixed picture of what someone in crisis is supposed to look like, and thin privilege decides whose suffering gets taken seriously. A thin person restricting food or exercising compulsively tends to get noticed and worried over, sometimes offered help before they even ask for it. A larger person doing the exact same things is far more likely to get complimented on their discipline and told they’re finally taking their health seriously, and can go years, sometimes with a doctor’s blessing, before anyone names what’s actually happening to them. That gap costs people in larger bodies real time and real care. It also does something quieter to the field as a whole: it teaches funders that this illness has a look, and that the look is thin, young, and usually white, which makes the whole cause seem smaller and more narrow than it is. A cause that gets mistaken for only touching people who already carry some privilege is an easier cause to skip. It reads as less urgent, less universal, less deserving of a real gift, in a culture that already treats a smaller body as some kind of personal achievement. People don’t reach for their checkbook for something they’ve been led to believe only affects a narrow slice of people who have it easier than most, even though this illness moves through every size of body, and the people most hurt by that misunderstanding are often the ones the healthcare system has already failed because of their size.

There’s another reason that doesn’t come up as often, maybe because it sounds more reasonable than the others. A lot of people who could give simply don’t trust that their money would go anywhere. They look at how small this field is and read that smallness as proof of failure, or worse, proof that nobody’s actually figured out what helps. What they’re missing is that the smallness is the cause of that impression, not evidence for it. You can’t produce the kind of large, visible progress that wins over a skeptical funder without ever having had the money to work at that scale to begin with. Cancer research gets to point to survival curves that bent slowly over fifty years of steady investment. This field has never had fifty years of steady investment, or even five, so there’s nothing equivalent to point to. The underfunding creates the doubt, and the doubt keeps the funding away, and around it goes. Naming that loop doesn’t break it. But pretending it isn’t there doesn’t help either.

And it isn’t true that nothing in eating disorders advocacy works. Look at The National Alliance for Eating Disorders. They run a helpline staffed by licensed therapists, not volunteers working from a script, and they run free support groups led by actual clinicians for people who’d otherwise have no way into care at all. None of that is glamorous. Nobody puts a helpline on a gala invitation. It’s slow, unglamorous, hands-on work, and it’s the kind of thing that’s easy to overlook precisely because it doesn’t make noise. That organization is proof, right now, today, that money handed to this field turns into real help for real people. And they’re still stretched too thin, still turning away requests they know they should be able to meet, not because of anything they’ve done wrong, but because doing it well and doing it small only gets you so far. If an organization with a record like that is still struggling this much, the excuse that this field can’t be trusted with money doesn’t hold up. The truth is closer to the opposite. It’s never had enough money to find out what it’s actually capable of.

Then there’s the harder question, the one people tend to skip past because it hits close to home: why don’t the people making the most money in this industry give any of it back? I mean the owners of the residential and PHP chains, and the venture capital and private equity partners whose funds sit behind a lot of those chains, the people whose margins exist in part because clinicians are underpaid and programs are understaffed. Real money moves through this industry. Almost none of it moves toward research, or advocacy, or the scholarship funds that would let a family without means actually walk through the door of the treatment these same owners’ profit from. I watched this play out once, at a gala for a national organization that provides treatment scholarships for people who couldn’t otherwise afford care. One owner in that room stood up and gave. Everyone else sat and watched, in a room full of people who could have matched that gift and never felt it in their bottom line, at an event for an organization that was, in real time, describing how hard it was becoming to keep those scholarships funded. I’ve thought about that room more than almost anything else I’ve seen in this field. Not the person who gave. Everyone who didn’t.

I keep picturing the same scene. A room full of people who’ve all been personally wrecked by this illness in one way or another, each one waiting for somebody else to be the one who passes the hat around. Meanwhile the people who actually started something, who spent their own savings on a helpline or a nonprofit because no one else would, who took calls at midnight because there was nobody else to take them, are still standing there holding it.

None of this gets fixed by a better statistic. Most people already know someone dies from this illness roughly every hour. That fact alone hasn’t moved the people who weren’t already moved by something else first.

What might actually move something is saying the real reasons out loud instead of the comfortable one everyone reaches for, which is that this field is underfunded and nobody quite knows why. We do know why. What are we going to do about it?

More soon.