Mental illness is not a crime.
And yet, this country is so ill-equipped to properly treat people with mental illness. We don’t talk about it; we keep it buried in the corner, we hide the behavioral health floor within hospitals and tell loved ones “no one by that name is checked in here”. We send our mentally ill to doctors and therapists who don’t understand the disease; who try to prescribe it out of their office after an hour on the chair. We refer to people who are mentally ill as “crazy’, “nut job”, “looney”, “bat shit crazy”, or any other number of derogatory terms. When we realize what we are doing isn’t working (surprise!), and we can’t deal with our mentally ill anymore, we stop dealing with them all together.We put them in group homes or nursing homes or we altogether forget where we put them and then they end up homeless.
If you haven’t guessed it yet, I am dealing all too closely with a loved one suffering from mental illness. Multiple mental illnesses, possibly. And it has been the most soul crushing, eye opening, heart-breaking, infuriating experience I have had in my adult life. One that makes me want to start a national conversation and debate about how f’d up the state of mental health care (or lack thereof) is in this country. And yet so many of us are afflicted by it.
A family member suffers from a host of mostly un-diagnosed mental disorders. I say mostly un-diagnosed since we aren’t allowed to talk to any therapists regarding their mental state thanks to HIPAA. If they don’t show up for her appointments, no one cares, no one calls the family members, and the conditions worsen. If I had to guess, I’d assign them adult ADHD, bi-polar disorder, anxiety, and severe and chronic depression. I would also say that they have lived with these disorders their entire life, but self-medicated with alcohol, which gave rise to an entire other set of issues, as you can imagine.
When I paint this picture of my loved one, the average citizen would sign off on them as “a big loser.” Their own sometimes did; in fact we even nick-named this person “Crazy So-and-so”, a name they even referred to themselves as. Only in hindsight do I see how horrible that name was to label them with, and maybe even contributed to the downward slide.
But this person is truly a kind and loving soul; giving, caring, compassionate. They never, ever complained, even though the universe gave them much to complain about. They were always taking care of others around them – co-workers, parishioners, random elderly folks they met, the guy they met in the canned goods aisle at the grocery store; we used to joke that they should start a half-way house. Raised Catholic, they always had faith and shared that faith and the kindness with the world. Until…. until something changed in them, or more specifically, in their brain.
There is a saying that God does not give you more than you can handle. I think that’s bullshit. Sometimes, the universe gives someone way more than they can handle, and they actually break. Their spirit breaks. Their soul is crushed. And no amount of medicine, inspirational quotes, therapy, or outside love can fix it. God dishes out too much and you implode. People really do just break.
My loved one broke. They are broken. I want them back, but I don’t know if they will ever come back. And it kills me to see them this way.
But what kills me almost as much it to have an inside look into the healthcare system in the United States, and how ill-equipped it is to manage the mental health of our citizens, and to get them on a program that truly works and makes a difference in their lives. A program that rekindles the light inside of them.
For starters, the system assumes you will do what you should, and have the strength to not only make your appointments, but show up for them (whether you have transportation options or not), ensure you maintain them, and ensure you take your medicine. This does not happen most of the time. And family members have a hard time gaining access to the system to be allowed to assist with appointments. Mentally ill patients should first and foremost be assigned a case worker who stays with them during their entire course of care, even if it may mean a lifetime. The case worker needs to act as coach and drill sergeant to make sure the most important steps of care – being present to get the care, happen. But social workers are a dying breed; underpaid, overworked, and not given the support they need to succeed.
I can tell you what happens instead; mentally ill patients make some baby steps, then fall into a pattern of self-neglect, then end up in urgent care or the E.R., where the whole cycle starts over. They consistently abuse the system because they wait until their symptoms become so horrible that they are life threatening, and then push the panic button. This is draining on our health care system, our care workers, families, and the patient, who additionally ends up with a bigger financial mess then they started with. And in our situation, the healthcare system “flagged” my family member as a patient they just didn’t want to deal with anymore, and eventually”kicked them out” of the system. Yes, that’s right. They sent a letter stating they should seek services elsewhere if she couldn’t keep appointments.
Imagine what getting a letter like that does to a person who is already severely depressed and does not know where to go to get care.
Yet even more painful is the inpatient experience for our citizens who seek or are committed to behavioral health services. My own first experience with having my family member check themselves in was traumatic; I knew they had been delivered to one hospital to have their heart checked (the original issue they went in for) and that they had then supposedly been transferred to another for behavioral health, but no one at the hospital could or would confirm that. When I phoned the hospital they were supposedly delivered to, the man who answered said “no one by that name is checked in here.” Confused , with panic rising in my chest, I called the E.R. back at the first hospital; after breaking into tears on the phone, it was explained to me that they are not allowed to tell me if a patient is there or not; and that I should just call back and ask for them again and they should take a message. With my anger rising by the minute, I called back, to which the man again insisted he had no one by that name there. I then got very angry, and told him I would call the police and file a missing person’s report since his hospital system had “lost” my family member; he laughed and said “the police won’t do anything; this is law in our state as it relates to mental health”. I almost lost my own mind at that point. After more tears, he finally relented and said ” give me your name and number and if they are here, and if they CHOOSE to, they will call you back”. Are you F’ing kidding me????? This is how we take care of our mentally ill and the families that are trying to support them?
Thankfully, they called back.
Now imagine if they had not. Imagine the pain, the worry, the fear, the wasted resources, the stress the family would have gone through wondering where they were and if they were safe. This is how mental health care works in our country. And supposedly it’s to “protect those seeking care”. Because you know, being mentally ill is shameful, and we need to be sure we hide it under the covers so no one knows it’s there.
The second stint with inpatient care (just 60 days later) was equally eye-opening and heart wrenching. My family member checked themselves in after an in-home care worker urged them to do so or be committed. Three days into their admittance, and not one social worker, therapist or doctor had phoned us to let us know of their condition, their treatment, their progress or lack thereof. Going for a visit almost put me over the top. Entering a locked hospital door with a security guard; having to leave all of my belongings in a locker, and waiting in a “day room” while my family member was summoned. Was I in a prison or a program to treat human beings with an illness in their brain? It was every bit as horrifying as the movies make it out to be; patients with varying degrees of mental illness, addiction, or brain damage dressed in gowns either pacing the floor, eating their hair, coloring, or starting at a wall. All looking dejected; all looking “thrown out”. And among this was my family member. My kind, loving, compassionate family member. I’ll admit it, the behavioral health ward of a hospital was so depressing, if I were admitted there with depression, I’d probably want to kill myself. There is nothing there to inspire anyone who is broken to want to put their parts back together again. Group therapy twice a day? Coloring books? Three year old magazines and romance novels? Wii bowling? Hospital food? This is supposed to bring someone back from the depths of the hole they have been living in for months on end? To chase away their demons? What the hell is wrong with this country?
Ironically, I had brought my family member a copy of a book by SARK, the author I wrote about in an earlier post. The book is Transformation Soup: Healing for the Splendidly Imperfect, and I quickly paged through it before I handed it over. I happened to tag a page that about mid-way town proclaimed:
“We do need a hospital for the brokenhearted. There would be:
- Daily neck and shoulder massages
- Movies about self-love and transformation
- Community to cry with
- Inner beauty makeovers
- New clothes and haircuts
- Growing things
- Hugs from children
- Clean sheets and hot meals
- Radio playing no love songs
- Library with no happy love stories
- Stacks of blank journals and art supplies
- A padded, soundproof room in which to release anger
- Punching bags
- Supportive reminders from friends
- Accelerated healing and time passing faster
- New Hope
(clearly this post was focusing on those that are suffering from lost love, but I very much think it applies to people who are broken for any reason).
I wish this for my family member. I wish there was something that could light the way for them out of the deep, dark despair they are living in. Chronic and severe depression and bi-polar disorder is a diagnosis half-way to hell, if not all the way for some people, and our programs to lead them back from hell are just not working.
This is a long post. It was an exhausting one to write; it took me almost a week; from the time my family member was admitted, to just today, when I had to turn my fountain of support for them off for a bit as it was absolutely draining me, which is a topic for a whole other post.
If you are suffering from mental illness yourself, please reach out. You are not alone; there are so many kind, patient, knowledgeable people out there to help you. They want to help you on the road to recovery. And there IS a road to recovery. Please try to get on it and stay on it.
Humans who suffer from mental illness deserve to be treated with the same kindness, caring, compassion, concern, fundraising efforts, and community support as people with cancer, ALS, Alzheimer’s, MS, or any number of other diseases that affect the body instead of the brain. Mental illness is not a crime; let’s stop treating those who are suffering from it like criminals.