On Refusing to Take Medication

I avoided medications of all varieties for much of my adult life. When I was 36, I had had too much of my depression and opted to start taking Prozac under the care of a psychiatrist at Redwood City Kaiser. I stayed on anti-depressants alone until I was 47 when I finally acknowledged my bipolar disorder after a suicide attempt and added mood stabilizers to the list of drugs that I was taking. Why did I go so long before I sought relief? Mostly because of a prejudice that had been drummed into my head by my mother, a registered nurse, who believed that medications should be avoided at all costs and that my depression and manic swings were character flaws. When I stopped listening to her, the quality of my life improved and I was able to be the person who I always knew that I was.

Many people feel that people who refuse to take medications should be forced to take them. They cite incidents such as a New York City man who went off his meds and started hitting people with a hammer or a schizophrenic woman who killed her baby in a fast food restaurant’s bathroom. The recitation of such litanies by certain advocates who favor forced medication is stigmatizing because the vast majority of people who go unmedicated don’t commit such crimes. Their struggles are worse than those of us who don’t take them, but it is important to understand their reasons for refusing.

One can roughly break these down into a number of categories. The first that comes to mind is the side effects. You start taking the Depakote that your psychiatrist prescribes for you and within a few months you have gained a hundred pounds. Or you get on lithium. Though the doctor is carefully monitoring your levels, they get too high when he raises it just one more increment. You develop lithium toxicity — whose many symptoms include nausea, vomiting, hand tremors, uncontrolled eye movement, slurred speech, and seizures — and end up in the emergency room. Other drugs have their own set of problems including liver damage, carb cravings, anxiety, akithesia, tardive dyskinesia, cognitive deficit, and damage to the central nervous system.

Sometimes it doesn’t take much of a side effect to put a patient off. I know a fellow who needs medication for his bipolar disorder but whenever he goes on one, he stops as soon as he feels nausea. There’s no getting him past that point. Once he feels the need to throw up, he’s off the pill. I have personally experienced side effects that necessitated my changing medication; when I was on lithium, I experienced kidney damage — exacerbated by diabetes; Abilify gave me shooting pains up my arms which indicated nerve damage; Geodon made me uncontrollably dizzy.

I have been lucky in that my side effects have been few and manageable, but others get hit by a chemical baseball bat. When people hear these stories they often say “What is going to happen to me?” and they avoid treatment. (This was one of my mother’s favorite bogeymen.)

Medications are not always the magic bullet. There are times when they just don’t work. So you get on an anti-psychotic to combat hallucinations but when you take the medication you get all the side effects but still get the hallucinations. What’s the point?

I have known people who discovered that they really something other than classic depression or bipolar disorder was causing their mood swings. Misdiagnosis happens. One man I know struggled for years with depressions that no psychotropic could fix. He started feeling weakness. A series of medical tests uncovered multiple sclerosis. Other people I know have mood swings because their thyroids are out of whack. One woman spent years being treated for schizophrenia only to find that her hallucinations were due to a slow-growing brain tumor. Psychiatrists merely label their unusual patients as “treatment resistant” and do not refer them to their general practitioners, endocrinologists, or neurologists for further investigation. When you are on the wrong meds for your condition or fail to get proper surgery, your suffering won’t abate.

Some believe that their illness is not psychiatric but something else. The belief may be delusional or it may be the result of reading something out of context or their imagination. Kooks and quacks preach that all mental illness is due to immune system collapse, bad diet, vitamin deficiencies, or even Lyme Disease. A few people self-diagnose. “Of course it can’t be a mental illness,” they say and they are adamant in their belief. This may be tied to bipolar or schizophrenic delusions.

Psychiatrists will often medicate people at the highest dose possible. Overmedication is fine when the patient has just come out of a severe episode, but a few alienists never reduce the dose. Intelligent people especially rebel against this. Nobel-prize winning economist John Nash, for example, stopped taking his antipsychotics many years ago. He deals with his hallucinations and delusions by realizing that they are just background noise that he must ignore. An Unquiet Mind author Kay Jamison often chides psychiatrists for keeping their patients on too high a dose so that they lose their creative impulses. Some psychiatrists let their patients titrate their own levels, but this has its own problems. When I was on carbamazepine, for example, I didn’t like the fuzziness that I felt on the highest dose, so I reached an agreement with my doctor to allow me to take a smaller one if I wished. Of course, I went for the lowest dose possible. This landed me in trouble with many people in my life, but it was two years before I got a clue and went back to the proper level.

The potency of one’s formulary should be developed through interaction between the patient and the psychiatrist. The goal here isn’t to create flat-lining zombies, but to enable people to experience a normal range of emotions. Psychiatrists listen to their patients’ reports and not fiddle around with their prescriptions too much. Patients should avoid over-reporting — or under-reporting — their symptoms lest their psychiatrist be tempted to put them through an unnecessary medication change or fail to treat them for unidentified syndromes. Labels such as “treatment resistant” should be avoided so that patients don’t lose heart.

The aspirin fallacy is another reason why people stop taking meds. It is based on this parallel: you have a headache, so you go to the medicine cabinet, and take an aspirin. The headache goes away. What do you conclude? You don’t need to take any more aspirin because the headache is gone. Psychotropic medications don’t work that way: you have to keep taking them so the symptoms don’t return. You will always have bipolar disorder. You will always live with schizophrenia.

Not every patient who ends up in a psych ward due to psychosis will need to be on medication all his life, however. A lucky few have one episode and never have another one. Many overestimate their chances for this outcome. They may be fine for years before their next episode hits with a vengeance. But the experiment will still have been worth it. Who wants to live with all the limitations that being mentally ill implies? The overwhelming majority of these will not be violent.

Many may not need to be on anti-depressants for life. Roughly a third of people who go off anti-depressants find that they need to go right back on. Another third finds that they are fine at first, but one day the Beast is back and they have to start over. And a last third never experiences depression again. Those odds are worth playing.

Alternative medicine is more attractive to people who struggle with mental illness than it should be. Some use over-the-counter supplements such as St. John’s Wort instead of the usual anti-depressants. Others buy outright snake oil like that peddled by a certain Canadian company founded by a hog farmer. They argue that alternative treatments don’t have side effects, but this is nonsense because they do and those side effects can be worse than the ones you get on standard psychotropics or even out and out poisonous.

The claims for medical marijuana made by NORML have tempted more than a few. Despite extensive studies — many conducted in the Netherlands where pot is legal — that show that marijuana increases psychotic symptoms such as paranoia, delusions, and loss of insight, NORML continues to list bipolar disorder as one of the symptoms helped by marijuana consumption. Taking marijuana with your regular medications occurs (just as some continue to drink alcohol) despite the fact that, at best, the soothing effects of cannabis are cancelled out by antipsychotics for a zero net gain. People, I think, just want to get high or avoid having to make new friends.

Homeopathy is a particularly dangerous alternative medicine. The idea is that you don’t need to take your full dose, but you can impress its effects on ordinary water by “bruising” it. First you dissolve your meds in an amount of water and shake. Then you empty out half, refill the container, shake, and pour out half again. You keep doing this until there is so little of the drug left that it couldn’t stabilize the mood of a mosquito. I have known people who used this technique. They continued to suffer from mood swings, paranoia, and anxiety but they insisted that homeopathy was helping them!

Hostility towards doctors and pharmaceutical companies fuels alternative medication. When you enter the mental health system, you surrender a certain amount of control. Many patients are not patient with this state of affairs. Side effects anger them. The reticence of their doctors to discuss these issues irritates them. Along comes a conspiracy theorist (the backbone of most alternative medicine) who tells them about the billions Big Pharm makes. (Of course they don’t mention that Big Alternative Medicine is a four billion dollar a year industry with none of the safeguards that Big Pharm must observe.) They conclude that psychiatrists and the medical drugs industry are out to get them addicted. Nancy Reagan’s “Just Say No to Drugs” rings in their ears and they eschew all pills and injections.

The paranoia cuts across all political and spiritual spectrums. Alex Jones tells his followers to avoid psychiatrists at all costs, likening them to the new policemen. Leftists warn me that medication is an upper class conspiracy to turn us into unthinking drones. You can’t escape the rhetoric in some political circles.

Psychiatrists have found that church attendance strongly correlates with compliance, but spirituality does not always support recovery. I know of a woman who sought the help of a faith healer who told her — after he prayed for her — that she was cured of her bipolar disorder and could stop taking her meds. A few days later, she was in a locked ward after ramming another car from behind and burning its driver with her cigarette. Others try to rely on meditation or yoga, developing obsessions that are lauded as spiritual until the symptoms grow too strong for anyone to bear.

Other kinds of peer pressure play against compliance. More than once I have heard of friends who try to convince patients that they really aren’t mentally ill and that they aren’t the same person as they used to be. What they missed was their friend as the life of the party or their fellow drug user. (I think my mother missed the fact that I rose to her bait.) These same “friends” aren’t there when the manic joy-rider crashes into a depression.

Not so long ago a woman told me that she was against psychotropics because people who went on them lost their personality. I replied that most of us felt that we could be the people who we knew we always were and couldn’t be because our moods prevented it. Previously I noted that some feel that there is a conspiracy to turn us into robots who don’t speak up against the oppression that is always there. I found my politics didn’t change, but I picked my battles more wisely. People who know me well can vouch for the fact that I am the same person, just one who is not always dealing with interference from the catastrophic shifts in mood. Yet despite examples of recovery such as myself, the myth continues to thrive.

Helicopter caretakers do more harm than good. Many a child has stopped taking medications when he becomes an adult just because he feels overwhelmed by such parenting and wants to exercise control over his person for the first time in his life. (As you have seen, control is a common theme here.) These same, often abusive, caretakers try to extend their domination of the patient beyond their late teens and into their life. Such people call for forced medication and the erosion of HIPAA protections for adults. It is true that conservatorships are called for in severe cases, but I have to wonder to what degree is the stress from dealing with parents who just won’t get out of your life causes the illness of some patients to spiral in intensity?

Insensitive psychiatrists do their part to alienate people from the care they should have. I am fortunate to have a good doctor, but there are many who wreak emotional harm. Many simply dispense meds without explanation or warning about side effects. They continue to prescribe the same treatments even when they have been shown to be ineffective or promote life-threatening side effects as weight gain. I have heard of a few who put patients on medications such as olanzapine and then scold them for putting on weight. Many are emotionally distant. Some are abusive. One I heard about called his patient a whiner in front of his father when he complained about how the meds made his thinking fuzzy. Who wants to deal with a hostile doctor? Go through a couple of psychiatrists like this and you won’t want to deal with another.

The moral here is that the patient is not always the one wholly to blame for noncompliance. He can be goaded into it.

More than a few people have told me that people like me crave our manias and our hallucinations. This is true in some cases, but not all. Why allow the medications to take these cool sensations away? These are a small minority of sufferers, but to hear the forced treatment advocates you would think that they are legion.

The program Law and Order often used a plot that proceeded like this: A schizophrenic was a witness or a victim of a crime. The trouble was that he wouldn’t take his meds, preferring to deal with the hallucinations and delusions rather than the side effects. The district attorney would move to force him to take his meds so that he could testify. The medications worked overnight (miracle of miracles!), the patient was cogent, and the district attorney got his testimony. But the next morning the patient was found dead from suicide because he just couldn’t live without his hallucinations or with the side effects.

They killed a few schizophrenics that way on the show. What a penalty to pay for compliance!

My mother convinced me that my mood swings were due to a character defect, which gave her grounds to abuse me. I was lazy. I was damned. I was chosen by God for special punishment so what could I do? How could medication help with that?

Some fear that their friends or family will find out that they are on medication, thereby outing them as mentally ill. I was once told that this was a “crazy” reason for not taking one’s meds, but think about it. When you are mentally ill, people treat you differently. You are assumed to be volatile, unpredictable, stupid, and little more than a child. Many keep their illnesses a secret from all but their closest friends for this reason; and even then they may pay a price for revealing their condition. Having meds around increases the risk of discovery. Given all I have mentioned, wouldn’t you think twice?

Three strong and under-acknowledged reasons for not taking medications remain. Psychiatric treatment is expensive. Even in this age of Obamacare, many cannot afford insurance and fewer still can afford paying for treatment. Cheap medications such as lithium carbonate do exist, but what happens when lithium proves toxic and you have to stop taking it? People have been known to commit crimes so they would end up in jail where they could get their medications for free.

The Community Mental Health Services Act freed us from the mental hospitals, but when we got out, we found the clinics that we needed to lead our lives didn’t exist! Proponents of forced treatment never seem to put any energy into pressing for their funding despite the fact that a robust mental health system is vital to the success of their programs. Where the clinics do exist, its doctors and social workers are overworked. So how can they keep track of those who fall through the cracks or just stop coming? Virginia Tech shooter Seung-Hui Cho was known to be unstable, but doctors didn’t have the resources to track him down when he stopped coming to the clinic.

Forced treatment advocates often disingenuously cite the fact that the jails now are places where the seriously mentally ill end up, but they won’t tell you that forced treatment implies more policing and the loss of freedom for mental hospital inmates. Here in California, Laura’s Law the first step is to call in the person who is suspected of being mentally incapable of taking care of himself and working out a treatment program in which he has a say. Most opt to take medication when confronted with their illness. New York’s Kendra’s Law hasn’t been as successful because psychiatrists are either loathe to violate their patients’ civil rights — as the forced treatment advocates claim — or, more likely, they are simply overwhelmed by the number of cases that they have to manage! These programs cost money! Laura’s Law faced many hurdles until at last counties were able to use money from a mental health millionaire’s tax to fund local programs.

I have only begun the list of reasons why people refuse medications. What clumps together are these general trends: first, fear of side effects. Second, fear of loss of control over one’s affairs. Third, anger at caregivers. Fourth, lack of insight into one’s condition. Fifth, the effects of stigma.

It is time that we realize that it is not the patients who have failed, but the interventions that we employ.

What can we do? What do patients need?

First, we need to fund research into drugs with fewer and more bearable side effects. Not everyone responds the same to the same medications. Not everyone gets carb cravings when they take an atypical antipsychotic, to cite one example. But we need to understand the biochemistry of those who do and devise treatments that get around these problems. Too often drug companies falsely claim that their products avoid the problems of others in this class: the makers of Seroquel, to name one, told people that it didn’t cause insulin resistance when, actually, it did. These stories do not bolster patient confidence. The medical profession and the pharmaceutical companies need to take our concerns seriously.

If necessary, we should invest government money into this research. Trust me: it will be necessary.

Second, we need to educate people about mental illness. What is it? What can you do to help someone who is in an episode? How can you be a better listener? What is stigma and what can you do to fight it?

Third, we need to promote self care alternatives that augment recovery. I have seen a few leaders in the forced treatment movement deride these as “treatment alternatives” when they are no such thing. Support groups help people stick to their treatment programs, talk to doctors better, find treatment resources, deal with hostile family members, and find new friends — to name a few things. The group that I am part of makes it expressly clear that we are not a substitute for medical treatment. Most do. We can help people become more likely to take their meds. Peers listen best to peers because we are the ones who know what it is like to live with a mental illness.

Established institutions should lend a hand here. Churches, for one, should open their doors free of rent to such groups without the ambition to convert attenders to their faith.

Fourth, we need to spend money to realize the promise of community mental health centers. Along with housing, they keep people off the streets and out of expensive mental hospitals.

Fifth, we need to fund these clinics sufficiently so that the staffing pressures that cause clinics to lose track of patients do not occur.

Sixth, we need to oppose privatization. Privatized clinics and group homes care more about the bottom line than they do about their charges. They entangle legislators and congressional representatives in a political mire that makes change impossible or merely superficial. Private hospitals and group homes tend to keep the easy patients while discharging the more-expensive-to-treat serious cases. We cannot afford their ersatz standard of care.

Seventh, patients must be involved in their own care. People are more resistant to treatment when they feel that it is just forced on them. Doctors need to treat the patient as an essential part of the team who does more than just do their bidding. They must take time to explain why they are prescribing drugs and they must take patients’ concerns about side effects seriously. Both doctors and caregivers must put the patient ahead of their own convenience.

We are not children. We are adults who have the capacity to be a part of our recovery. That is something that forced treatment advocates do not seem to grasp or want to understand.