Lithium: A Survivor’s Guide for Parents

Part 2 of 2

When I was a young adult, I went into therapy for an eating disorder that went unrecognized. Instead, I was misdiagnosed with bipolar disorder and placed on the drug lithium. My parents did not approve, but as much as they tried to support me, they had no say in the matter.

If your child is a minor, then you do have some say in whether and how your child engages with the mental health system. You may feel frustrated and dismayed in pushing back but remember: You’re also responsible for your child’s well-being. I am appalled at the number of parents who would rather risk seeing their child literally killed by psychiatric drugs than try anything else. Statistically, people who take these drugs tend to die 25 years younger than the rest of the population. If you simply accept what the doctors say, decades from now you may very well be attending your own child’s funeral.

I don’t mean to be harsh here. I respect the decisions people have to make. Please be aware, though, that the doctors are not going to inform you of the things I am about to tell you about lithium.

It is a dangerous drug.  Psychiatrist Peter Breggin describes it as a neurotoxin. Taken as directed it will eventually destroy the thyroid gland and cause kidney failure, and can also cause a rare kidney condition called diabetes insipidus. I have all three of these conditions, and all are from taking lithium. It is not a safe drug for anyone at any age.

Question Conventional Wisdom

Furthermore, “bipolar disorder” is not truly a lifelong condition, if it’s a condition at all, and it’s not due to a chemical imbalance that is somehow magically corrected by lithium. Psychiatric drugs often exacerbate the problems or, more often, create new problems in the people who take them. What the public doesn’t realize is that psychiatry has, for the most part, discarded the chemical imbalance theory popular decades ago. They do not know why or how the drugs help people, or even if they truly do.

Therapy can also be harmful. While the popular idea is that “taking a good look at yourself” might be healing, too much coerced introspection can cause self-absorption. This is a destructive path indeed. The general public is unaware of the addictive nature of therapy, especially long-term therapy, which was the protocol back in the day for many of us deemed “severely mentally ill.”

Our culture has taken a swing too far into the self-improvement realm, which instead of solving social problems, only increases class struggles. We now have a new class division— the sane and the insane — created by the dangerous idea that some people are inferior to others (eugenics). It’s time we started looking outward more and learning about each other. We need to focus on making the world a better place.

I am 61 years old now. I am living on the edge of end-stage kidney disease caused by lithium. If I could undo everything, take it all back, by all means I would not have taken lithium. I would not have started on any psychiatric drug nor gotten hooked on therapy. As I say, my original reason for seeing a therapist was for an eating disorder and somehow, that got twisted around, ignored, and then translated to “bipolar,” “schizoaffective,” or the Diagnosis of the Day.

What They Don’t Tell You

If you are considering lithium for your child, please talk to some adults like me who have taken this drug. Get another opinion. Please check out the drug resources here at Mad in America, for starters.

If your child is not a minor, then the decisions are partly out of your hands. By all means, your adult child should be making the decision whether or not to take lithium. However, from the patient’s viewpoint, it is nearly impossible to make an informed decision while on a locked hospital ward. Patients are rarely given adequate information to make an informed choice. More likely, they are told that for them, lithium is “as essential as insulin is to a diabetic.” This is untrue; while insulin is the only established treatment for diabetes, there are multiple options to ease mental suffering.

Your child will likely not be informed honestly of the consequences of taking lithium— especially the long-term risk of early death or kidney disease. I recall being told with a shrug, “It might make you a little thirsty,” as if it wasn’t very important to know the murky details. I implore parents to take the responsible route. You have more resources at your fingertips than your incarcerated child. Take advantage of your freedom and try to obtain as much unbiased information as possible. Knowledge is power.

On the wards, it is common for personnel there to essentially bribe patients, not allowing them to leave unless they take the drugs they are prescribed. In my experience, most patients complied with this demand. However, some were already hoping to stop the drugs. Typically, these patients who really did know better kept their intentions secret, for obvious reasons. Patients often take drugs just to earn their release from the wards, but after leaving, they stop them, even cold turkey. Stopping suddenly may lead to terrible consequences, but tapering is possible.

Support Your Child’s Choices

If your adult child wishes to stop psychiatric drugs, why not support this notion, instead of being an adversary? You may have supported your child when he decided to major in something you knew wouldn’t stick, or when he dated that girl who turned out to be nothing but trouble. You stood by him all those years. Why not stand with him now?

Along with the Mad in America website, the Icarus Project, Surviving Antidepressants, and the Inner Compass Initiative all have excellent resources and instructions on how to slowly and safely taper off psychiatric drugs.  Check out the “I Got Better” section of MindFreedom International. Talk to psychiatric survivors. Read our stories. I would not trust most doctors to take a patient off drugs safely. My experience is that doctors are not properly trained in how to do this since they assume patients will be on the drugs for life.

If your adult child makes the decision to stay on lithium, then do your best to be supportive of his decision. Nagging isn’t productive. Try to help him understand that the pimples, weight gain, and shaky hands are not a mental illness. They are a consequence of lithium. Be a good listener! Do visit your child in the hospital if that’s allowed, but know that during these visits, you won’t get a real view of what the ward is like. The staff make sure of that! Let him know you are there for him and will help out any way you are able.

Understand Lithium’s Effects

If your child has already experienced the consequences of lithium, be sure also to let hospital personnel know of your child’s medical condition. It is especially important that they understand if your child has or shows signs of diabetes insipidus. This is a rare condition, caused by lithium, that renders the kidneys unable to concentrate fluids. What results is extreme thirst, due to the body’s need to take in extra fluids. Many nurses and even doctors do not know why patients on lithium drink so much. Many even claim the thirst is psychological, or even an addiction.

Be sure that they have a thorough understanding that your child needs to drink extra water. This is vital because it’s not uncommon on the wards to put mental patients on water restriction. This practice is caused by sheer ignorance on the part of the staff and is all too often used as a disciplinary or punitive measure. Water restriction will cause your child to become dangerously dehydrated, especially if the hospital carries it out too long. Patients have died due to misunderstanding about diabetes insipidus. Your advocacy can much improve or even save your child’s life.

If your child already has kidney disease from lithium, know that it is not a death sentence. When I realized I had been lied to for decades, I found it difficult to trust any doctor at all. This has turned out to be a fear that keeps me alive. I do all-natural medicine and it is really working to improve my kidneys and keep me healthy. At 61, I can carry over 50lbs of groceries in a knapsack, can run four miles, and recovered from anemia even though I was told it would never happen. I am also working full-time. They should tell me more things I will never be capable of doing…I would be doing all of them!

Stand Your Ground

As parents, you have more knowledge of what makes your kid tick than any doctor could possibly have. As advocates who stand your ground, you are also setting a terrific example for your child. Showing your child your insistence on thinking logically and independently will inspire your child for decades to come. I know mine did. Thanks, Mom and Dad!

This blog is adapted from a chapter of Julie’s upcoming book, Life After Lithium.

You can read Part 1 of this essay here.