Getting Help

Navigating the System: Introduction

In the event of a first-time psychotic episode, whether it is yourself or a loved one so afflicted, getting professional help can seem impossible, and may in fact be extremely difficult. The first line of response is always your local emergency room; if the episode is in its florid stage, or it occurs after regular office hours, this may be your only option.

For many reasons, the ER is not the most ideal place to end up if you do find yourself in the situation of having an acute psychotic breakdown. First, the ER is a traumatic place to have first contact with medical professionals, due to other traumatic events happening concurrently in the ER, and by the often-paranoid effects of being under sudden and intense scrutiny in an institutional setting. Secondly, by the "emergency" nature of the place, you may, and most likely will, end up in the hospital's psychiatric ward, and it may not be a voluntary decision on your part.

However, when a psychotic episode is an emergency, often times the hospital psych ward is the first and best and safest place where medical treatment, i.e. antipsychotic medications, can be administered, while you are in a protected environment, and under 24 hr. supervision and observation. Depending on the terrain of your local health system, which varies widely depending on whether you live in an urban or rural, progressive or under-served area, the ER may very well may be the best, and possibly only, point of initial contact for your receiving treatment. The best case scenario, and I can't predict what a specific local emergency room may do in your specific case, is that you will be given samples of antipsychotic medications to "tide you over" until you can get in to see a private or community psychiatrist. The medications will help to control and hopefully alleviate any positive symptoms, i.e. hallucinations, delusions, and disordered or irrational thinking, that you may be experiencing, all of which can be extremely frightening and can cause extreme agitation including suicidal behavior or self-harm. You may then be sent home, ideally in the care of a loved one or family member. In fact, the hospital will probably not release you unless you will be under the supervision of and in the care of a responsible adult party.

However, if you are deemed a danger to yourself or others, the hospital staff may urge you to voluntarily commit yourself to the hospital's psychiatric ward; this option is preferred, although voluntarily committing yourself may not mean you can then voluntarily uncommit yourself when you feel better. They may also decide it best to involuntarily commit you, a reality which should not deter you from seeking help via the ER. This is most likely to happen if you are resistant or deny that you need help. If you are floridly psychotic, get yourself to the ER. If you are able, find someone to go with you; if not, check yourself in. Remember that lashing out or threatening or becoming violent will get you nowhere fast except locked up, and possibly tied down in four-point restraints. Do not threaten hospital staff, and try to stay calm and under control. Difficult to do when demons are screaming orders at you to leave, or run, or rebel. Don't listen to the voices, remain calm, and try to realize that staff are there to help you, not hurt you.

Hospital psychiatric wards are usually designed for short-term care, ranging from several days to 15 days, as in Britney Spear's case, when she was ordered by law to stay in the UCLA psych ward for that extent of time.

The most important aspect of hospital psychiatric wards to be cognizant of is that if you are deemed too psychotic or are deemed a danger even after your initial stint there, the hospital may then decide to send you from the psych ward to a longer-term facility, for example, a public mental institution. Even the wealthiest and most influential of parents or loved ones may not be capable of stopping this process once you are admitted, as described in Lori Schiller's personal memoir, The Quiet Room. However, understanding of mental illness is improving since her experience, and it is best to try to be cooperative and calm, and things will most likely go much more smoothly and much more easily than depicted in books and popular movies.

In Lori's case, when she was first hospitalized in the 1970's, she was acutely suicidal, and had ended up in the ER because of a very serious and real attempt at killing herself. Obviously, this is definitely not the way to begin your relationship with the medical profession: someone should have recognized the severity of her situation earlier, before her condition escalated to the point of attempted suicide.

Today, medical professionals, the general public, friends, and family are, it seems, becoming more attuned to the potential and early signs of mental illness, which, in the case of schizophrenia, is at least, for someone in the throes of an initial breakdown, perhaps a good thing, as many people, at the outbreak of their first psychotic episode, fail to seek professional help, as was the case with me. Although education about mental illness is helping people to recognize the early warning signs of psychic distress, an attempt at intervention may feel like persecution to someone, for example, me, when I was experiencing the first signs of decline in functioning prior to my acute florid psychotic breakdown.

The dean of my college phoned my parents from Boston to tell them that I was behaving and dressing strangely, and that they were concerned about my mental state. I suppose they thought I was either on drugs or crazy, the latter of which was the case, although at the time I was required to meet with the dean to discuss what was going on with me, I was still in the stage doctors and scientists call the "prodrome", or stage preceeding the full-blown onset of the illness. When I went to meet with the dean, it was just two months prior to my acute psychotic breakdown, (at which point the "voices" first started and became a full-time, permanent aspect of my everyday reality). The psychosis became acute and florid during the final weeks of my senior year, just prior to the completion of my degree, which I did manage, in spite of being unceremoniously catapulted into the darkest midst of spirit-being interferences.

The doctors hold that schizophrenics, especially initially, cannot recognize that they are sick and need help. I know from my own thought processes and feelings at the time, that I didn't tell my family or anyone else, not because I didn't recognize something terribly wrong was happening, but because I was afraid of being locked up and given zombie-fying antipsychotic medications. Which did in fact turn out to be what happened when my family staged an intervention a year and a half later, and sent me off to see a psychiatrist at Duke University.

To the medical establishment's credit, the medications in use in hospitals and mental institutions nowadays are way better than the older, typical antipsychotics such as Haldol, which is what I was envisioning all antipsychotics were like when I made the decision not to seek medical help. However, even the newer, atypical antipsychotics, such as Zyprexa, Risperdal, Seroquel, and Abilify, for instance, are not without very distressing initial side effects, such as heavy sedation, and all have much worse side effects with long-term use. But even so, these atypical antipsychotics have at least some degree of efficacy in controlling some florid psychotic symptoms, and so are the best line of defense, and the only relief from psychosis yet known. (Although I would be dishonest not to say that none have been able to silence my voices, although I have yet to try clozaril, which is reserved for treatment-resistant cases, and is the last hope for many people who do not respond favorably to the other atypical antipsychotics. Clozaril has potentially fatal or life-threatening side effects in a small percentage of patients, and requires weekly blood testing, but it is also known as the best antipsychotic currently available, and is the medication that helped Lori Schiller get her life back, as well as Elyn R. Saks, author of The Center Cannot Hold, which is another insightful personal memoir of living with schizophrenia).

The best option in the event of a florid psychotic episode is to get an immediate appointment with a private psychiatrist, if one can pay for it and most importantly, gain access to one, as most have fully-booked schedules. However, in extreme cases, you may be able to get in within days, if not sooner, depending on the particular psychiatrist's schedule and the receptionist's sympathy and ability to understand the urgency of your situation. It is definitely in your best interest to have an advocate call for you -- a trusted loved one or family member. And to have that person accompany you to the doctor's office for your appointment.

Another option, especially if you are without health insurance or cannot get in to see a private psychiatrist, is to go to your community health center. Most, at least my own local community health center, have emergency walk-in hours, when you can wait to (hopefully) be seen by the emergency psychiatrist on duty.

Another important point to remember is that you need to see a psychiatrist, not a psychologist, clinician, or therapist (although the emergency intake at my community health center requires an intake evaluation with a clinician before you are then put on the list to see the doctor). And in fact, at least in the past, under different management, and in the absence of the emergency clinic, I was required to schedule and keep a full appointment with a clinician/therapist/psychologist, before I was allowed to make an appointment to see a psychiatrist.

A psychologist or therapist may be useful in the interim before or after seeing a psychiatrist, but note that they cannot prescribe medications. They can only talk you through any situation you might be going through, and in certain set-ups, may also be able to refer you to a psychiatrist, or better still, get you an immediate or earlier appointment with one. In fact, my last private psychiatrist required a full evaluation by a therapist, before it was determined that I was a suitable candidate to be admitted as a patient in his practice.

One major problem to managing your illness over time will inevitably be maintaining what medical professionals call "continuity of care", i.e. not ending up without your meds. There are piles of case studies of people who have, for whatever reason, gotten off their medications, and with the return of overwhelming psychotic symptoms, were left devastated, either from loss of a job, being kicked out of their group home or living arrangement, being recommitted to a mental institution, and in the most tragic instances, either hurting or killing themselves, or hurting or killing someone else. The stress of scheduling, planning, and making your doctor's appointment each month, in addition to meeting with a therapist every other week, plus trips to the pharmacy to call in and pick up medications, even having to get regular lab work done, as with lithium and clozaril, can be difficult, to say the least.

Add a regular job to that strain, and even a sane person would be left frazzled from having to come up with novel new excuses for why you have to leave work in the middle of the afternoon, for example, to go pick up your prescriptions, and wait in a crowded waiting room, watching the minutes tick by. One particular agency operating within my community health center, that is now closed, required that I see a therapist every two weeks, and a psychiatrist every month in order to receive care. Missing an appointment can be devastating, especially if you are not able to get in touch with your prescribing doctor to authorize your medication refills. The wait for a new appointment could be up to a month, and community health centers can be poorly managed, under staffed, and over-taxed.

In fact, I have been a patient under four different "incarnations" of my local health center: four differently named agencies have successively, with interruptions, been "in charge" of my medical care over the course of the four years I have been in and out of their systems. At one point, the agency in charge at the time closed abruptly, without warning, and I was left without any medications or medical oversight for four months, because I couldn't get over to the center during business hours, as I was working as a temp in an extremely stressful, busy, and strict medical research department, and I didn't have health insurance. I was sleeping two hours a night for the duration of that "gap in care".

The efficacy of talk-therapy for schizophrenics is currently debated by medical professionals -- for some reason, many doctors feel that talking about psychotic symptoms does not help that person. Elyn Saks, at least, is an avid-proponent of psychotherapy, however, and maintains that without those human connections, she would not have been able to manage her illness as effectively as she has done throughout her adult life.

Saks is not alone in this belief, and more progressive medical professionals recognize the vital importance of a complete regiment of psychosocial rehabilitation, including a psychiatrist's supervision, a comprehensive medication arsenal, counseling, talk therapy, group therapy, guided activities, supervised living arrangements, back-to-work & work-support programs, support groups, caregiver support, and the like.

Once established with a doctor and adequate support for your illness, there are other hurdles, obstacles, options, and avenues to recovery that I will discuss in the remaining pages in this section, topics such as: community health centers & patient assistance programs for medications; mental institutions; group homes; disability; and the Americans with Disabilities Act (ADA), the EEOC, and job discrimination.