Why is it so hard to be around mentally ill people?

All of us in 2012. 

Once every so often, the stars align perfectly and all your deepest, darkest questions are answered. That is exactly how I felt when I stumbled upon the article “Whyis it so hard to be around mentally ill people?” by Kevin Turnquist,M.D.  

Dr. Turnquist’s audience for his article is his peers, other psychiatrists. As I read it, I gained a new perspective on how mental health services are provided in the US (like why it is impossibly hard to get an appointment with a psychiatrist in the first place.)  I also received new insight as to the struggles my husband Rob and I have had in trying to provide care for my mentally ill parents and mother-in-law.

First of all,  Dr. Turnquist’s and I aren’t writing about the many people who suffer from mental illnesses who are able to lead functioning and happy lives. We are talking about the most severely impaired people who are involved in intensive treatment or require supervision to get through their days. My parents and mother-in-law fall into that specialized category, which means Rob and I deal with a higher level of shizz on a regular basis. It can be exhausting and that is why this article is so important to me.

Why the Professional Help Isn’t There:

Dr. Turnquist’s makes an interesting point:

“The mental health field is also qualitatively different from other medical disciplines… In nearly every other field it is the best Doctors that care for the sickest patients. Even when professionals in these other area move up their systems hierarchies into more administrative jobs, they typically retain a fair amount of direct patient care in their work lives. Things are very different in mental health though. In our business the care of the most severely ill patients typically falls to physicians and other professionals with the least amount of training and experience.”

What??

So when my loved one gets admitted into a mental health hospital, they aren’t treated by the best, most senior psychiatrist in the joint? WHY NOT? 

Because:
“…There is no denying that in our field there is a real aversion to caring for severely mentally ill people. Psychiatry is a peculiar little corner of medicine and the care of the sickest patients is, in turn, a peculiar little corner of psychiatry. In the mental health field much of the care of the sickest people falls on people who have little interest or training in providing it. And when doctors or other professionals are able to move into an administrative position it’s extremely common to see them completely sever all ties with patients. In our field if you’re regarded as really ‘high ranking,’ the proof is that you no longer have to take care of patients at all.”

It is ridiculous to think of ICU patients being taken care of by the most inexperienced physicians, but that is the reality in mental health care. So many instances where I have dealt with craziness in hospitals and mental health clinic systems now make perfect sense. I had assumed I was dealing with the best. Now I know I every time my loved ones are under the care of a mental health care professional, they are getting exactly the opposite. It sucks to be mentally ill and reliant on public health care services. Welcome to America. 

It’s Not Just Hard to get a Psychiatrist; it’s hard on Family and Friends, too

“Even people that know and love the client will often try to see as little of them as possible…It’s very rare to see someone with a severe mental illness maintain long term friendships that were formed prior to the onset of their disorder. Even family members may sever ties with the clients completely over time.”

Rob and I have our times with our 3 elderly amigos where we know we need a short break from their specialness. We regularly thank G_d for the blessing of a nearby nursing home that takes care of the day-to-day needs of our parents. We have no idea how we could possibly take care of them, our children and our own lives if it wasn’t for the nursing home staff. They are not mental health professionals, but the workers do naturally possess the skills needed to handle our loved ones.

Things that make it hard

“The nature of mental illness commonly leads to the loss of empathy for others, increased self-centeredness and a near-complete disregard for social conventions. When unspoken rules around bathing, dressing, conversation or intruding on the personal space of others are violated, it makes people feel very uncomfortable. The desire to flee the presence of people that don’t act like other people can be very powerful.”

Ain’t that the truth? Some of my biggest struggles in life have been in dealing with my loved ones problems of not bathing, dirty clothes and weird conversations in public. And a whole bunch of other stuff that I don’t have the energy to list here. Just know that the dirty clothes thing is huge, huge, huge for me.

“The things mentally ill people need and desire are really no different than the needs that all of us have. They want decent housing that they can afford, good food to eat, some meaningful activities, a sense of belonging, and a realistic hope for a better future. All of these things are, unfortunately, scare commodities in our mental health systems. Instead we offer them the things that are suited to the needs of administrators, politicians, and other policy makers. “

And trust me; I am NOT happy about this reality. I long for the day when we have politicians and people in power who actually “get it” in terms of what severely mentally ill people need to function in society.

“There is never a shortage of suggestions about how to live their life differently – it’s the things that they need to accomplish those goals that are in such short supply. If case managers and other professionals had an abundance of enriched living environments that provided work, food, and a modicum of supervision it would be much less painful to face their clients each day. “

And it would bring peace to families to know that their loved ones have a quality of life worthy of humanity.

What it takes to Do This Work

Humor

“When one observes really good mental health professionals several common traits are often seen, regardless of the discipline that the person works in. Some would say that a robust- even slightly ‘sick’ sense of humor – may be the single most important factor that a mental health worker can possess. Laughter has all sorts of effects on the nervous system that can counteract the biological results of ongoing stress. A playful quality in one’s work also helps us to keep some perspective on situations that might otherwise feel overwhelmingly hopeless.”

Yes, Yes, Yes.  I only count as my closest friends those who share my twisted humor and who can jump in and join my darkest gallows humor to help me laugh instead of cry. Thankfully, I have friends only a phone call away and I always have Rob nearby to drag into the Pit of Crassness as needed. Bring on the wildly inappropriate jokes, please. It really helps on the bad days.

“Clients appreciate being able to laugh on occasion too. Who wants to have people constantly peering at them with an eye to determine what is wrong? And some of the things that mentally ill people do, say, or believe are just flat out funny. To feel guilty about seeing the humor in the work we do can be incapacitating. “

Holy cow, isn’t that the truth? Some of the best family stories we have are about funny stuff our parents have said or did. I think it is a gift from the universe to help ease the burden of the undeniably heavy stuff.

Perspective

“Long-time staff workers have usually developed an ability to remember whose life it is that they’re dealing with. Clients ultimately are seen as maintaining responsibility for their own lives and workers are responsible simply for doing their best to help within their own limitations.”

Rob and I have worked hard to develop the ability to separate ourselves from our parents so that we can stand next to them without embarrassment, worrying that their behavior is a reflection on us. Some days are better than others, depending on how ‘out there’ they are that day.

Engagement

“The best mental health workers never lose their sense of curiosity and wonderment. No other field provides us with so much information about what humans are really about. We are allowed to see the best and the worst of humanity- and everything in between.”

Amen and amen. Although we are the first to admit our parent’s mental health problems challenge us in ways that tax us, Rob and I agree that from them, we have also learned so much about what is right and good and lovely in the world.

The Future of our mental health system

“It’s a very touchy subject but the other obvious conclusion is that, at an administrative level, something must be done to counter the powerful tendency to distance one’s self from mentally ill people. Who in the their right mind would design a mental health system in which the main decisions are made by people who have no real knowledge of what it’s like to be mentally ill these days? Requiring that administrators be well trained and experienced in the care of mentally ill people just won’t happen. But it’s not too much to ask that everyone spends some time working in direct contact with clients, just so they don’t lose sight of what this is all supposed to be about.

It’s reasonable for taxpayers to demand that each of us that work in publicly funded mental health systems spend at least a few hours per week in direct service to clients. If dishing up meals or driving people to appointments is the best we can do, we should at least do that.”

The enlarging gap between severely mentally ill people, their loved ones and the people in charge of the system that cares for them, is going to continue to widen without making real, concrete changes to how care is provided. And it should start by insisting the best health care workers show up to provide the care.