The Futility of Hiding Your Mental Illness
What would you think if I said, even if you keep your mental illness private, you are revealing just as much about yourself as I do in this tell-all newsletter?
HIPPA will turn twenty-eight years old in August. The legislation set standards for the privacy of healthcare information by limiting who has access to personal and diagnostic data and who they can share it with. Ostensibly, it still does all this. But the legislators who passed the HIPPA law did not anticipate electronic medical records systems, giant, multi-office, multi-specialty healthcare conglomerates (I was surprised when I went to my GP who practices at a different conglomerate from my psychiatrist that my psych med information was already in the system), the same in big company insurance, and the internet.
Today, what HIPPA is most effective at is keeping fax machines alive in the small offices of independent practitioners and therapists, and preventing the families of adults having a severe mental health crisis from getting any information about, or getting the necessary help for, their ill family member.
Let’s take that first. I’m in the midst of an all-out mixed episode that has me not working, hallucinating, dependent on new meds, and unable to do some of the easiest, friendliest, social tasks. I’ve also had a few periods where I should have gone to the hospital. But I didn’t, and unless I showed up at an emergency room and declared myself a danger to myself or others, or unless my family called the police and had them drag me away, I’d never get admitted.
In this moment of creeping paranoia I’m still able to trust my wife. She knows my doctor, although he holds to the letter of the law and clears everything with me before he talks to her. As for work and a pending disability claim, my wife is handling everything, because I can’t. Without her I’d already be on the street or in a motel far away. I gave the HR department at work permission to deal with her and they do.
So HIPPA is working, right?
Well, despite these well-intentioned, although family assistance limiting, procedures, there’s another source of information that influences my thoughts about and decisions made about my bipolar disorder. It’s some algorithm that knows more about me than anyone, anywhere.
When you first visit a new doctor there’s either a clip board with forms to sign or pages on a screen to click through. In all of this is the privacy stuff. How and who with they can share your private information and it mostly works in your favor.
However, on every device, app, search engine, social media site, and just about anything else on-line is this box that says “I agree” that you just click, with no real idea about what you’ve agreed to. You just know that if you don’t click “I agree” you can’t use what you’re just dying to scroll down, shop on, or seek information through.
These contracts, which you’ve signed by clicking “I agree,” don’t protect your privacy. Quite the contrary. There’s a tech industry maxim that if you don’t pay for the product or service that you’re using then you are the product. And through the contracts you’ve agreed to you are just that.
Everything you’ve ever done on-line is available for some marketer or special interest group to purchase. All of your internet searches and on-line activity enters an algorithm that sends information back to you designed to influence and manipulate what you buy, and even what you think. So that search for a vacation in Montana, or a new brand of dog food, or some sexual kink, or a spiritual crisis, or all sorts of medical information – symptoms, medicines, side-effects, research, alternative treatments, prognosis – it’s all available in your on-line profile. And oh yes, Alexa, your phone, and most TVs are always listening and collecting this data, too.
Right there with the political views you really hold and your TV streaming preferences are your deepest secrets, things you’d never tell anyone, but you looked them up and now they’re out there for sale and ready to come back at you as “you may know,” “you may like,” and ads.
Now, there’s no one in Silicon Valley sitting at a terminal who knows all this stuff about you. It’s more insidious than that. If you’ve been querying symptoms of bipolar disorder your data is just sent out to any company or group shopping for people just like you.
There is no privacy. Privacy is a quaint remnant of the 20th century. I’ve said for years that by the time my daughter goes to high school the algorithm is going to know so much about you and be so advanced that you will think it and it will happen. She starts high school next year, and I think we’re there.
I tell her and her friends to be careful what they post, because it will be out there forever, always available for someone to access. The kids will ask me the biggest difference between now and when I was a teenager. I tell them that when I was young, if you really screwed up you could move, pull it together, and re-emerge a new person with a second chance. Make a better life free and forgiven of your mistakes. That was the American myth, and for many it came true. Now all you’ve done follows you around forever and you can’t make it go away. What is a self? What makes a self? In an age of information your full self is in cyberspace, independent of your current actions or thoughts. Completely separate from your present experience.
Click on it and you are it. In a practice like meditation you reveal that your passing thoughts, whether self-defeating or grandiose, are not you, and you can be free of their influence. In cyberspace and your digital self those same passing thoughts are you. Completely.
So yes, I explicitly put my life with bipolar disorder out there for anyone to read. But so do you, in a way. Technology has been a tremendous help and a deep source of useful information, but it bites back. Hard. Just be careful what you share. And be aware of and careful with what you’ve already shared, because that’s what much of the world and a lot of machines think you are.
Yup, privacy is now passe.
Every medical office I go to asks me to sign a *blank* electronic pad. (CVS asks me to sign a pad, which they pressure me NOT to scroll through... often it is hiding a consent for auto-refill, so they bill my ins. co. for a refill, even if I ending up *not* wanting it.) If a dr's office does ask me to sign actual papers, the papers invariably say that I *agree* that I have received the HIPAA privacy policy -- and they never, ever actually do include it. Then we go through an ordeal, wherein they tell me that no one, ever, in 20 yrs has asked them for it, and they don't have a copy of it -- but I should sign anyway, saying I've received it.
I used to express anger and tell them they were asking me to commit fraud, blah blah blah. Now I just act, sort of, mystified, as if I am not capable of understanding what they're telling me. I act the same way with the blank electronic pad -- because the young staff is literally unable to understand why someone would not want to sign a blank screen. Instead of threatening to report them to some agency, I get a blank look on my face, and say, "Oh, I don't sign those things, could you give me the paper version?" I think it's my graying hair and fragile look, that ultimately gets me the paperwork.
Because, the thing with their office (so-called) "privacy policy," is that it says they can share your records with any other medical practice that they want to, without your consent -- and also, typically, that your info goes into an HIE (Health Information Exchange)... so that any other doctor in the same HIE has access to it. It sounds innocent enough. But it's actually like the Seinfeld episode: you have one bad experience with a doctor (e.g, the doctor is rude to you, and you tell him so), and then allll the future doctors see the notes from their colleagues, that you're difficult, confrontational, psychosomatic, etc. Then they get angry and accuse you of "doctor shopping" -- as if that's a *bad* thing! It has happened to me countless times. Being a female patient, going in alone, doesn't help. We're still treated as if we're at the auto mechanic. We're still constantly called "hon," we're still *repeatedly* patted on the knee by the dentist, we're still asked on dates while in the exam room -- it's exhausting.
So, yes I take those paper privacy notices, I email/call the privacy office, and I "opt-out," whenever possible. It's time consuming and frustrating. It doesn't prevent all the record-sharing. But it helps.
Anyway... the form that gives permission for the dr. to speak to your wife and family members, whom you delineate, is a completely different form, than the HIPAA "privacy policy" to which I am referring.
And I am sincerely very glad for you, George, that you have love and support through all of this. Thank you for keeping in touch with us via the substack, not only because you have a talent for putting into writing what we ourselves are dealing with, but also because we genuinely care about you.
Wise words, George. I don’t like being the “product”. Nor do I relish an algorithm knowing more about me than I choose to tell it. Hmmmm.