A Handy List of Everything Wrong with Creating a Database of People with Mental Illnesses

It’s not like anyone expected the NRA to say anything intelligent during its long-awaited press conference on Friday, so I’m not exactly disappointed by what they said. I am, however, completely appalled at the NRA’s ignorance of mental illness and insensitivity to those affected by it.

Along with a few other laughable suggestions, like putting armed security guards in elementary schools, Wayne LaPierre, the NRA’s Executive Vice President, said this:

“How many more copycats are waiting in the wings for their moment of fame from a national media machine that rewards them with wall-to-wall attention and a sense of identity that they crave, while provoking others to try to make their mark.

A dozen more killers, a hundred more? How can we possibly even guess how many, given our nation’s refusal to create an active national database of the mentally ill?”

Now, I’m not sure to what extent LaPierre actually believes that this is a realistic and ethical goal as opposed to a throwaway remark intended to deflect responsibility from his organization and the products it defends. It’s also unclear how much the NRA’s leadership has discussed and promoted this idea.

However, I think it’s still worth using this example to show how ignorant these people are about mental illness, because I’m quite certain that they are not alone.

So, here’s everything I can think of that’s wrong with the idea of creating a national database of people with mental illnesses.

1. It’s redundant.

As Kate explains on Ashley Miller’s blog, mental health professionals are already required to break confidentiality and report when patients pose a clear threat to themselves or others. Rather than putting this in some sort of “database,” they report it to the people who know best how to use this information–the police. I’m not sure if LaPierre is suggesting that we create a public database of people with mental illnesses so that armed vigilantes can take matters into their own hands or what, but I think most reasonable people agree that dealing with people who have expressed the intent to harm others is best left to the police.

Furthermore, as Sarah Kliff writes in the Washington Post, 38 states already require or allow the use of mental health records in background checks for people trying to purchase guns, and the Gun Control Act of 1969 bans the sale of guns to people who have been committed to a mental institution in the past. However, that act is difficult to enforce because state reporting laws vary so much, and unfortunately for LaPierre, it is unconstitutional for the federal government to require states to report mental health records for a national database.

2. It violates existing laws.

As Kate also mentions, HIPAA (the Health Insurance Portability and Accountability Act) requires that people’s medical records be kept private. (So strict are medical confidentiality rules that when I saw a psychiatrist as a 19-year-old dependent on my parents’ medical insurance, the psychiatrist had to ask for my consent before she explained to my mom why she thought I needed antidepressants.) Creating a national database of people with mental illnesses would mean repealing or amending this law. Can the NRA summon up enough support in Congress for that?

If LaPierre intends to use this database to restrict the ability of people with mental illnesses to access to resources they need, such as jobs and schools, that would also violate the ADA (Americans with Disabilities Act), which bans discrimination on the bases of mental and physical disability. And, regardless, as mentioned in #1, creating a national database would probably not be constitutional because the federal government would have to force states to report mental health data.

3. It’s probably impossible to determine which diagnoses should be included.

Repealing or amending HIPAA would also mean deciding which diagnoses would suddenly not be subject to confidentiality. People like LaPierre seem to think that schizophrenia and bipolar disorder are the most “dangerous,” but what about substance addiction, which is highly correlated with violence? Would every alcoholic have to be registered? What about autism, which many people falsely associate with violence? And, if yes, then what about Asperger’s Syndrome, now considered a “mild” version of autism that’s on the low end of the spectrum? What about depression, which can sometimes involve psychosis?

Or, since LaPierre simply called it a “national database of the mentally ill,” should we include everybody with mild depression, social anxiety, a phobia of elevators, an eating disorder? Should we include people whose mental symptoms are caused entirely by another, purely medical illness? Should we include people who develop depression as a result of, say, cancer?

4. The list of ethical ways to use this database is very short.

Seriously, what would you do with it? Deny these people access to employment, education, and housing? Then you’d have to repeal the ADA. Surveil them? That’s a violation of civil liberties (not that our government’s great about that). Bar them from purchasing guns? As mentioned above, that’s already going on in the majority of states, and it’s one of the reasons “liberals” are trying to pass stricter gun regulations. But this is where the common argument against such regulations–that criminals will find a way to get guns anyway–can be turned right back on those who tend to spew it. It’s worth noting that Adam Lanza did not purchase his guns; he got them from his mother, who bought them legally and is not reported to have had any mental illness.

5. Most people with mental illnesses do not get treatment.

And you can’t register them in a database unless they do, obviously. One study suggests that over 60 percent of people with serious mental illnesses, such as schizophrenia or bipolar disorder, do not receive consistent treatment. This means that a majority of the people who should be in the database wouldn’t be in it, anyway.

Although the association between mental illness and violence is tiny, people with untreated mental illnesses are more likely to be violent than those whose illnesses are being treated properly (although the link between mental illness and violence is still very small). This means that the people who would be on this database are the ones who are least likely to cause anyone any harm.

In any case, the percentage of people who don’t get the treatment they need would probably go up, because:

6. It would discourage people from seeking treatment.

The stigma of mental illness and treatment already keeps many people from reaching out for help. If you know that going to see a therapist or psychiatrist could put your name on a national registry of people to be feared, stigmatized, and discriminated against, why would you do it?

Even if most of what I’ve said above about misuses of this database turns out to be a huge strawman–which I don’t know, because LaPierre hasn’t specified how he wants this database to be used and it’s important to consider the potentially dangerous ramifications–people will still worry. Even if the only purpose of the database is to prevent people with mental illnesses from purchasing guns, people will still be worried about that information falling into the wrong hands.

This, of course, is the final nail in the coffin of LaPierre’s idea. Even if nothing else that I’ve said about it were true, this point would be reason enough not to do it. Anything that prevents people from getting treatment is, by default, the wrong solution.

I already know many people who refuse to seek treatment for a mental illness because they are worried about being discriminated against if the wrong person finds out. Although the ADA supposedly protects them, it is difficult if not impossible to prove that discrimination has occurred. Those fears could grow much more urgent if simply going to a doctor and receiving a diagnosis puts your name and medical information into a national database accessible to god-knows-who.

This is what tells me that not only is LaPierre scapegoating people with mental illnesses to divert opprobrium from his own organization, but he also completely misses the point and fails to understand the first thing about mental health and treatment.

He gives away his views on people with mental illnesses when he says this: “The truth is, that our society is populated by an unknown number of genuine monsters. People that are so deranged, so evil, so possessed by voices and driven by demons, that no sane person can every possibly comprehend them.”

We are “genuine monsters” to him.

He’s wrong, of course. There are plenty of “sane” people who comprehend those with mental illnesses–researchers, therapists, psychiatrists, social workers, friends and family of those affected, and people who have recovered from those illnesses. That LaPierre personally fails to understand them says more about his own lack of both empathy and research in the field than about the supposed need to stick them all in a national database for the perusal of bigots.

It is also worth noting that in this emotionally charged statement, LaPierre fails to distinguish between people who commit acts of violence because of an illness they cannot control without proper treatment–which LaPierre wants to make it even harder for them to get–and people who commit acts of violence because they have no respect for human life and are seeking to make a political point, get personal revenge, and so on. Although violence and death, especially of children, is tragic regardless of the cause, that doesn’t mean that all violence is caused by the same type of person.

If I could make a suggestion to LaPierre, I would tell him to talk less, read and listen more. There’s reasonable disagreement to be had about how to prevent further mass shootings, but his suggestion was not reasonable. It was ignorant, offensive, and probably dishonest.

A Handy List of Everything Wrong with Creating a Database of People with Mental Illnesses
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[In Brief] How to Talk About Mental Illness Recovery Without Shaming

Lucy Hale covers this month’s Cosmo.

Remember that post about celebrity gossip I just wrote? Well, here’s an example of how reading that stuff can be useful and enlightening.

I’m reading an interview in the September issue of Cosmo with Lucy Hale, a 23-year-old actress most known for her role on Pretty Little Liars, a guilty pleasure of mine. In the interview, Hale opens up (apparently for the first time) about the eating disorder she struggled with as a teenager:

But behind the scenes, Lucy developed a dangerous habit all too common among young starlets. ‘I’ve never really talked about this, but I would go days without eating. Or maybe I’d have some fruit and then go to the gym for three hours. I knew I had a problem,’ Lucy says of the issue that plagued her for two years. Luckily, unlike some actresses who have been unable to escape the downward slide, Lucy had the strength to turn herself around. ‘It was a gradual process, but I changed myself,’ she says.

Except for the following paragraph, in which Hale talks about cutting damaging friendships out of her life, no other details are given about how she recovered from her eating disorder, and I won’t assume. However she did it, it’s awesome and she deserves to feel great about having accomplished that.

However, the Cosmo writer takes it a bit further with this sentence: “Luckily, unlike some actresses who have been unable to escape the downward slide, Lucy had the strength to turn herself around.”

Wait…what? So people who succumb to the “downward slide” of eating disorders, or who need professional help to recover, just lack the “strength” that Hale has?

Obviously, I disagree.

If Hale really did recover without any professional help–which, again, she does not make that clear–there are many potential reasons for that. Perhaps she had a great support system of friends and family. Maybe she’s not genetically predisposed to eating disorders. Maybe her parents have healthy eating habits that they were able to model for her. She might’ve not had as serious a case as others do. Or perhaps she just got lucky.

None of this means that actresses who are “unable to escape the downward slide” have any less “strength” than Hale did. It means, probably, that they had different circumstances. Different lives.

So, how does one talk about people who have recovered from mental illness on their own without putting down those who cannot? My answer would be, by not comparing them to each other. Hale recovered? That’s awesome. Another actress didn’t? That’s a tragedy, and she deserves help and support. Their illnesses are not comparable, even if they happen to share the same name.

As Leo Tolstoy said, unhappy families are all unhappy in their own way. Similarly, people who suffer from mental illness all do so in their own way. Just because one recovers and another does not doesn’t mean that one has more “strength” than the other.

P.S. Before anybody goes all “but it’s just Cosmo, who cares!”, Cosmo has a circulation of over 3 million in the United States and is also distributed in over 100 other countries in 32 languages. Readers of this blog probably think Cosmo is silly and not something to be taken seriously (which it’s not), but the truth is that many people around the world probably get most of their information about things like mental illness from media like this. So it’s definitely worth examining and critiquing.

[In Brief] How to Talk About Mental Illness Recovery Without Shaming

Anonymity and Mental Illness

The stigma of mental illness has many negative consequences, such as decreased access to employment and housing, barriers to seeking treatment, and many broken friendships and relationships.

What it also does, unfortunately, is make it much harder for people who’ve suffered from mental illness to speak about it publicly, using their real names.

I’ve been thinking about this because North by Northwestern, our campus magazine, ran a feature in its spring issue about mental illness at Northwestern. Overall, the piece was great and discussed how our academic system may be contributing to unhealthy levels of stress. The author of the piece interviewed two students who spoke about their experiences with depression and anxiety.

But both of the students’ names were changed for the article, and it bothered me.

For the record, I would never begrudge an individual for choosing to speak about his or her mental illness under a pseudonym. We all have different priorities, and not everyone has decided to spend their life advocating for those with mental illnesses (as, for instance, I have). Even those who do may decide that using a pseudonym is in their best interest–for instance, this blogger whom I greatly respect.

The magazine, however, could have chosen to find sources who would be willing to let their real names be printed. I know it could’ve, because those people exist on our campus. I’m one of them. Many of my friends are, too.

This is important for several reasons, some short-term and some long-term.

The short-term reason is that seeing fellow students speak publicly about their experiences with mental illness can make a huge difference in the life of someone who’s just starting to acknowledge and deal with their own illness. It lets them know they’re not alone and gives them hope for the future.

It can also give them a specific person to reach out to. After I started writing about depression, friends, acquaintances, and even strangers started writing to me, sharing their stories, and asking for advice. I heard from friends that I knew were struggling and friends who seemed to have everything together. I heard from a guy who’d told me once that he’d had depression briefly but pulled himself out of it on his own. I felt humbled to know the truth.

A friend of mine who spoke in a panel about her eating disorder once told me that she had the same experience. She was quoted in an article about the panel, and afterwards people reached out to her about it.

There’s a bigger picture, though, as well. Every time someone “goes public” about a mental illness, they chip away at the culture of secrecy that surrounds it. And the more of us do it, the harder it’ll be to deny us jobs, cut off friendships with us, continue believing that we’re weak and lazy, and be ashamed of us.

I’m glad those two students spoke to NBN, and I know it was hard for them to do even knowing that their names would not be in print. But NBN had a chance to do something really important, and they missed that chance.

As I was writing this post, I found out that there’s someone pretty powerful who recently took that chance. During his speech for people who have lost family members in the military, Vice President Biden talked about the deaths of his wife and daughter in 1972. Then, he said, “I probably shouldn’t say this with the press here, but it’s more important–you’re more important.” Then he went on:

For the first time in my life, I understood how someone could consciously decide to commit suicide. Not because they were deranged, not because they were nuts, but because they had been to the top of the mountain and they just knew in their heart they’d never get there again.

Biden’s not the only one, of course. Plenty of well-known people have spoken about mental illness, such as Rachel Maddow, William Styron, and Demi Lovato.

In his seminal book on depression, The Noonday Demon (which I have coincidentally just finished reading), Andrew Solomon intentionally avoids using pseudonyms whenever possible. On the first page of the book, he writes,

I asked my subjects to allow me to use their actual names, because real names lend authority to real stories. In a book one of the aims of which is to remove the burden of stigma from mental illness, it is important not to play to that stigma by hiding the identities of depressed people.

I believe that when writing about mental illness, one must be cautious of the status quo. With regards to mental illness, as with regards to just about everything else, the status quo can be a dangerous thing. You cannot think and write about the tragedy of mental illness without also acknowledging the tragedy of stigma, which pushes so many of us to stay silent for too long. In my case, it was eight years. For others, it’s a lifetime.

Accepting the use of pseudonyms in one’s work just because that’s what’s always been done, or because finding interview subjects who are willing to use their real names might be difficult, does an injustice to everyone who suffers from the continuing presence of stigma.

Anonymity and Mental Illness

Antidepressants and Strength of Character

You're not a bad person if you take any of these roads. I promise.

Spoiler alert: They have nothing whatsoever to do with each other.

There are different levels of stigma surrounding mental illness. There’s the stigma of having a disorder in itself, the stigma of being in treatment for a disorder, and, perhaps most of all, the stigma of that treatment being pharmacological.

People love to hate psychopharmacology, especially antidepressants, the efficacy of which is constantly being questioned (often for good reason). However, I’ve noticed that drugs like antidepressants receive a special type of scorn, one that cannot be based solely on the efficacy mystery.

I’ve found that where mental treatment is concerned, therapy holds some sort of moral superiority over drugs in many people’s eyes. I think many people still feel that mental disorders are spiritual illnesses, not medical ones, and that treating them with a pill is some sort of cop-out. (Imagine the public furor if researchers came up with a pill to, say, erase the feeling of guilt.)

This would explain why, though therapy is still stigmatized–after all, the Ideal Person works out these issues on his or her own–it is considerably less looked down upon than psychotropic medication. Our culture values struggle and hard work so much that even recovering from an illness should be mentally effortful.

What people don’t realize is that there are plenty of perfectly legitimate reasons why someone might choose medication over therapy, at least in the short term. Consider, for instance, the situation I found myself in a month before I began my sophomore year of college. Having spent my entire freshman year growing progressively more depressed, I’d thought that coming home for the summer would magically fix everything. It didn’t. With a month to go, I realized that I felt like I’d rather die than go back to school.

That was when I was first diagnosed with depression, and I think my psychiatrist realized, as did I, that I just didn’t have time to muck around with my feelings–I had to get better quickly, or else going back to school would be more upsetting and stressful than I could handle. So I started taking antidepressants and quickly improved enough to feel like I could deal with being in school. The mucking around with my feelings came later.

Aside from that, I can think of many other reasons medication can at times make more sense than therapy. For example:

  • Financial concerns. Antidepressants cost me $30 a month, while therapy costs $80 for four weekly sessions. That’s a pretty big difference for many people.
  • Time. Some people are at a point in their lives where they literally can’t spare an hour or more a week for therapy. That might sound ludicrous to you, but if you’re a college student, a new parent, or a low-income worker, it probably doesn’t.
  • Availability. Unfortunately, not everyone lives in an area where good therapists are available and accessible (and bad therapists will do more harm than good). This is especially true for members of marginalized communities, who may have a hard time finding therapists who are sensitive to their issues. Not all therapists are as open and accepting as they should be.
  • Insurance. I’m lucky to have a fantastic insurance policy that covers basically everything I’ve ever needed. However, many policies are very picky with regards to therapy (as opposed to medication, which does require a prescription from a person with an MD). For instance, some policies refuse to cover therapy unless there’s an official diagnosis, and you don’t necessarily need to have a diagnosable mental disorder in order to need help. Besides, you can’t be diagnosed without going to a specialist to begin with.
  • Nature of the disorder. Although most mental illnesses obviously involve a psychological component, some do not. For example, many people in temperate climates get Seasonal Affective Disorder (SAD) during the winter months, which is characterized by a low-grade depression as well as various physical symptoms. It’s usually treated with antidepressants or light therapy, which actually has people sit in front of full-spectrum light.
  • Language. Therapy requires people to talk pretty extensively about themselves and their lives, something that would be very difficult for, say, a new immigrant who’s just learning English. Unless such people are able to find a therapist who speaks their native language, it would be pretty hard for them to get anything out of therapy.
  • Comfort. As a future therapist, I obviously wish that everyone were comfortable with the idea of therapy. But not everyone is. That could be because of cultural factors, family attitudes, personality, or negative experiences with therapy in the past. I think that using medication to improve your quality of life while working up the courage to see a therapist is perfectly okay.

I hope that this list shows that making decisions about mental health isn’t that different from making decisions about physical health–it has more to do with personal preferences and practical concerns than with the strength (or lack thereof) of one’s character.

Of course, I do believe that therapy is really important and generally awesome, which is why one of my upcoming posts will be about why I think that everyone (or almost everyone) should see a therapist. Stay tuned.

Antidepressants and Strength of Character