People with mental illness frequently stop taking their medication. This is known as medication non-adherence or medication noncompliance. No matter what doctors choose to call it, however, it’s a problem. By and large, when the mentally ill stop taking their medication bad things happen to them. But if this is the case, then why do people with mental illness stop taking their medication?
Taking Medication for Mental Illness
I have been taking medication for mental illness for about 22 years. Over that time, I’ve tried pretty much every anticonvulsant, every antidepressant and every atypical antipsychotic and I’ve tried them in so many combinations, it feels more like a math problem than a mental illness issue.
And in that time, I’ve also had virtually every side effect. Everything from hair loss, to massive weight gain to body temperature change to high blood pressure to dizziness, to nausea and so very many more. And even now, of course, I still experience many drug side effects — after all, all drugs have them and the more drugs are in your cocktail, the more side effects you are likely to experience.
And here’s what I can tell you with absolute certainty — medication for mental illness is horrible. Medication for mental illness can make you feel like dreck. Medication for mental illness can make you wonder if the treatment is worse than the illness. That is what I can tell you for sure.
And while I’ve taken all those drugs, in some ways I’ve been lucky because for bipolar disorder, antipsychotic doses tend to be small and used in addition to more palatable medication. The same can not be said for those with schizophrenia. Typically, those people have to take doses of antipsyhchotics that would put me in a coma (among other things).
Others Opinion’s on Taking Medication for Mental Illness
This doesn’t even start to address the assholes (yes, I said it) that actually tell people with mental illness to get off of their medications. It’s hard enough to stay on horrible mental illness medication at the best of times but when there are groups out there that actively tell you you’re doing the wrong thing, it’s even harder. The pressure is very, very real. Scientology, some religions and antipsychiatrists exert this pressure and their heinous advice has harmed (often killed) many — not just people who have become floridly ill once off of medications, but also those around them who have become victims of the untreated mentally ill person.
Keep in mind untrained of under-trained professionals along with peers can also exert this pressure. It certainly has happened that people have gone to others such as a herbalist or counselor or peer supporter or many others to get help only to be told to stop their treatment. This is unacceptable but happens when people don’t know what they’re talking about. This, too, is seductive to the person in pain in mental illness treatment.
So the question becomes not, “Why do people with mental illness stop taking medication?” but, rather, “Why do people with mental illness actually stay on medication?”
Other Reasons to Stop Taking Mental Illness Medication
And there are yet other reasons people stop taking mental illness medications too. One of them is thinking that they don’t need the medication because they feel better. A well brain tends to think it doesn’t need external chemicals to function often thanks to the stigma surrounding taking mental illness medication. The trap here is that they only feel better because of the medication. Unfortunately, many people fail to realize this until they’re sick off medication again.
Finally, people stop taking medication because they don’t realize they are sick because of anosognosia. Anosognosia is a clinical lack of insight that occurs as a symptom of severe mental illness. I stress, this is neurological in nature and not the same thing as denial. This happens when the medication isn’t working well enough to address this situation. (Successful treatment of the mental illness also treats the anosognosia.)
Stopping Medication for Mental Illness
Because the thing is, I highly doubt there is a treated bipolar or schizophrenic out there that hasn’t wanted to throw their medications out the window at some point — myself included. I can’t tell you the number of times I’ve almost stopped, myself. (And I’ve written about the rare occasion when medication nonadherence or noncompliance is actually a good thing.)
But here’s the thing, if you have a mental illness and stop taking your medication, very, very bad things are likely to happen to you.
The first bad thing is withdrawal. People with mental illness who stop taking their medication tend to do it cold turkey because they are so fed up with the whole process. I understand this, but it’s a terrible idea. Withdrawal — acute and long-term — can be harrowing. Withdrawal from medication differs wildly with some medications being easier to withdraw from than others (and lower doses being easier to withdraw from than larger doses) but regardless, you will likely be in some form of pain, I promise.
After that, it gets worse. It gets worse because whatever you took the medication for in the first place returns. Disembodied voices return. Suicidal urges return. Outrageous spending habits return. Even violent impulses return. Because remember, you went on the medication for a gosh darn good reason in the first place and now, whatever reason that was is 100 percent back in your face. And this tends to result in people ending up in the hospital — at least, in the case of bipolar disorder, anyway. And, of course, the first thing they will do in the hospital is restart your medication. It’s an un-merry-go-round: medications, side effects, stopping, withdrawal, illness, hospital, mediations.
The only thing getting off of medication can do is get rid of horrible side effects — not cure whatever the underlying illness is. Sometimes we forget this. Sometimes we forget the agony of the untreated illness until going without medication makes it painfully clear. Again, medication was started for a reason.
It’s the typical out-of-the-frying-pan-and-into-the-fire scenario. But make no mistake about it, being on medication for mental illness can feel like being in a frying pan and it can make the fire look more appealing. This involves a false vision and usually rewritten history (i.e., the illness wasn’t that bad) but it is a real draw. Something we all — especially doctors — need to thoroughly understand and for which we need to develop empathy.
Because while the sickness of medications can pass, it’s true, sometimes there are long-term side effects that simply have to be borne by the person with mental illness. This is really, really shitty, but true for so many of us. Truly, wanting to get off this stuff is completely reasonable, it’s just something we can’t afford to do.
If You’re Thinking of Stopping Mental Illness Medication
If you’re on mental illness medication and can’t withstand the side effects — your feelings are very real and valid and need to be considered by your doctor. Have a straight talk with your doctor and simply say, “I can’t withstand these side effects. We need to make some changes.” And once you lay out what you can’t withstand, listen to what your doctor says. Maybe a tweak can address the worst of it. Maybe you haven’t given it long enough. Maybe there is no better choice. Any of those things are possible, but you won’t get down to the nitty-gritty until you make it absolutely clear to the doctor that the status quo is unacceptable. And if he or she refuses to listen? Time for a new doctor. Remember, that doctor works for you and not the other way around.
Stopping medication for mental illness is not the answer. It’s understandable, but it’s not the answer. Working with your doctor, or seeing someone new, is.
Why did I go off of my meds? My narcissistic mother kept telling me that I didn’t really have a mental illness, I didn’t really “need all those medications” and my doctor “shouldn’t be prescribing all those medications”. I finally started to doubt myself and believe her so I went off of them, thinking my illness was imaginary. I ended up in a psychiatric hospital for 3 months to get stabilized. For those who are convinced that, because there is no blood test that shows a mental illness, it doesn’t exist, you need to understand that mental illness is caused by a chemical imbalance in the brain. This kind of gaslighting of mental health patients is exactly what prevents patients from seeking help and often from staying on their medications. You cannot will your way out of mental illness and it is not a moral failure.
How do you know it is a “chemical imbalance”? Have you got the lab tests to prove it?
Actually, brain scans of schizophrenics are abnormal. Mental illness is obviously real and your having an agenda in disproving it doesn’t make it unreal. People don’t choose to suffer from severe mental illness. There are illnesses that don’t “show up on lab tests” and yet the medical community acknowledges them as real so your asserting that as the litmus test is subjective and not professional.
Here are 12 shocking facts about psychiatric medications:
1. No Physical Test Can Prove the Existence of a “Mental Disorder”
No blood, urine, or chemical imbalance exam can test for the presence of a mental disease or illness. Even x-rays or brain scans can’t show the presence of a “mental disorder.” This leads many to believe that healthy patients have a great possibility of being diagnosed with supposed “disorders” even if they are only displaying minor symptoms. Many of these symptoms include stress and difficulty concentrating — issues that can often be chalked up as a natural response to everyday stress.
2. The Psychiatric Industry is a $330 Billion Industry
That’s a huge number and many forces are at work to preserve and grow it. While most physicians are not mercenary in their approach to prescribing medications, there is an argument to be made for the possibility of a conflict of interest when it comes to the rise of psychiatric prescriptions.
3. Worldwide, Over 100 Million People Take Psychiatric Drugs
That seems like an astoundingly high number. What’s going on that so many among us feel the need to be medicated?
4. U.S. Department of Veterans Affairs: 23 Soldiers and Vets Commit Suicide Every Day
The most shocking part of this statistic is that it exists despite the use of antidepressants. These suicides are often due to post-traumatic stress disorder coupled with the inability to cope with civilian life. So far, the solution has just been more psychiatric drugs.
5. Worldwide, 17 Million Children Take Psychiatric Drugs
To say that this is a dangerous epidemic is an understatement. Regulatory agencies in Europe, Australia, and the United States have issued warnings about the potential for anti-depressants to cause suicide or hostility and rage.
6. 10 Million of These Kids are in the United States
That means the United States has 30% more children than the rest of the world on addictive stimulants, antidepressants, and other mind-altering drugs. That’s not a number one position to be proud of.
7. FDA Warnings Have Been Issued for Ritalin and Concerta
And they aren’t alone, and other psychiatric stimulants have had similar warnings issued for their effects on children. [8] What’s the problem? Well, for starters, these drugs may cause psychotic behavior, heart attack, stroke and sudden death. If that’s not enough, add suicidal thoughts and inclinations toward violent behavior to the list.
8. Antidepressants Come With a Warning Label
In 2004, the FDA finally ordered a “black box” label on all antidepressants to warn of psychiatric drugs’ increasing suicide risk in children and adolescents. Being an adult, however, doesn’t guarantee safety. In 2006, the FDA increased the age to include young adults up to age of 25.
9. Children Five and Under Are the Fastest Growing Group Being Prescribed Antidepressants
Think of all the kids under five you know — they’re the target for these drugs. Now picture this, from 1995-1999, antidepressant use increased 580% in ages 6 years and younger. It grew 151% in the 7-12 age group during the same time period. Without action, it’s only going to go up from there. Do you think children should take these drugs? Watch this video and decide for yourself…
10. 10% of Teens Abuse Ritalin and Adderall
That’s according to a U.S. news report. No surprise, these drugs have a tendency to be highly addictive. Unfortunately, because kids are prescribed these drugs en masse, availability isn’t much of an issue. They don’t need to over to skid row to pick this stuff up.
11. General Physicians Prescribe 70% of Psychotropic Drugs
No offense to family practice physicians, but should they be the ones prescribing the majority of these mind medicines? Pragmatically, this statistic literally means that a majority of these drugs get used without a psychiatric evaluation to determine if they’re necessary, appropriate, or safe.
12. Some Reports Show Antidepressants are No Better than Placebo
While published reports do show 94% effectiveness, taking a look at the total reports submitted to the FDA, only 50% reported positive outcomes. That being said, around 50% of patients would be better off taking a placebo. In addition, 31% of the 74 FDA-registered studies have never been published. Sound like a complicated number soup yet? It is, a 2009 analysis showed traditional pharmaceutical drugs yield inconsistent results.
The worst situation that has happened was because my treating psych refused to give me my meds even though I repeatedly asked for them. He kept saying that I no longer needed them.
4 months later due to a situation (mental breakdown) my baby was taken off me.
Psychs need to listen to their patients. Due to mine failing me, I’m now labelled a child abuse (even though no abuse or harm occured) and incapable of being a parent due to mental illness
These are the reason that come to my mind:
1. Feeling better (Euthymia. Don’t think you need meds anymore)
2. Feeling Worse (Patient may feel side effects are intolerable and believe they outweigh any derived benefit. Lithium, often referred to the “gold standard” gave me severe gas pains & diarrhea. It frequently caused me to poop my pants, especially at night. It was awful. I also hated having to take time off work constantly for lab tests to measure the drugs toxicity level in my system. Too much lithium can be toxic and long term use may impair/permanently damage kidney function.
3. Frightened. May have experienced a life threatening side effect that frightened patient. Haldol was the first psych med I was ever given. It gave me neuroleptic malignant syndrome which is extremely life threatening, it severely stiffens your muscles (including the heart which is also a muscle) . When I got out of hospital I immediately stopped taking it and for a very long time was unwilling to try anything new. Also the stressor that precipitated my first breakdown and caused me extreme anxiety/panic attacks was actually the disclosure of my childhood sexual abuse for which I was not believed. This med actually made me feel like I was being re-victimized and it effectively silenced me
4. Negatively affects appearance (Hair falling out, causing massive weight gain & metabolic syndrome which often makes it near impossible to lose weight, even with adequate exercise & proper diet. This in turn may negatively affect self esteem and relationship with spouse or partner)
5. May create or worsen existing physical heath problems, such as diabetes, kidney problems, etc
6. Meds sometime stop working (Meds may loose effectiveness over time). Unwilling to become a guinea pig/lab rat again while dr fumbles to find another drug that’s works. This may take a long time. You are often weaned off one drug while you are titrated on to another. Drug withdrawals can sometime be brutal, especially benzodiazepines.
7. Patient doesn’t believe in medication (Or maybe it’s taking too long to find an acceptable level of relief). Frustrated, impatient, they may choose to take back control and choose to try a more holistic approach on their own
8. Forget to take meds
9. Worried meds could be addictive (May be a recovering addict and worried it may cause a relapse)
10. Unaffordable (Living in poverty, lost their job)
11. Don’t have adequate heath care coverage
12. Stigma (Including self stigma. Worried may be seen as an unfit parent in child custody divorce proceedings, especially if meds have been ineffective in mitigating negative symptoms, or worsened existing ones)
13. Workplace discrimination (Disclosure of diagnosis may effect security clearance, ability to get a permit for firearm or driver’s license required in the course of their duties, may be overlooked/shortlisted for promotion, meds often affect workplace productivity, causing brain fog, may impede ability to operate heavy machinery)
14. Psych drugs often make patient feel extremely tired, kills motivation, induces apathy (especially antipsychotics) or else makes them feel too wired and suicidal (especially some type of antidepressants). Antidepressants have also been known to cause mania, another reason not to take them
15. Antipsychotics in particular suppress dopamine (the happy, feel good chemical). Makes them feel flat, void of emotion, like the walking dead inside)
16. Denial Of Illness (Due to ego, lack of insight or inadequate knowledge of illness)
17. Lack of support (Family doesn’t believe you need meds)
18. Worried it will suppress their creativity
19. May want to get pregnant but worried it will cause birth defects in baby
20. May cause sexual problems (Negatively affects intimate relationships)
21. Has poor therapeutic relationship with psychiatrist (Lack of trust, may have been involuntarily committed. Dr is dismissive of patient’s valid complaints, especially side effects and over prescribes.
22. Dr or patient has moved. Best doctors are often unwilling to take on new patients. Often long wait lists to get into see a new GP to get a referral to psychiatrist . Patient may live in isolated rural community where there is limited access to a pdoc
23. May feel they are misdiagnosed. There is no definitive blood test to prove/disprove diagnosis. Although pet scans may be revealing they are used more in clinical research and rarely for diagnosis. Different mental health diagnosis often have many overlapping symptoms. Borderline personality disorder and bipolar disorder are a prime example. But borderline personality doesn’t usually require medication. The diagnosis a patient receives is often dependant on how forthcoming they are with their Dr. That’s why a good therapeutic relationship is so important. It is quite common for patients to be given a number of different diagnosis over the years by a variety of different Drs
You are right about everything you have said here today. Thank you for the insight. For my sibling who is schizophrenic she is in a comma most of the time. Her meds are powerful. She sleeps all the time. Always tired. However, what you said the voices return, etc., and worse. Side effects are horrible. Most notably the weight gain, and I have seen neurological issues that I put a stop to. I thought she was maybe getting Parkinson’s or the like. Told the doctor but he ignored. I tapered her off one med and the symptoms went away. Dr. was pissed because I helped her get over being nervous all the time. He knew it was wrong and later admitted it. We need a knew doctor. This one has run his course. For my sister, if I am not around, those darn meds fog her mind and sometimes she forgets to take them and her other meds. Fortunately for her, I am around most days, and make sure that doesn’t happen. She’s been on her meds for 5 years. Developed late life m. illness. I hate that word mental illness. I think for a lot of people simply not having the support system is why they stop taking or in my sister’s case she is just simply so wasted on her meds to remember anything. Thank you for sharing. All those things you said above I have experienced with her and then some. Bless you, pretty lady.
Good article. Personally I think the whole medication thing is a journey. It took me years to realize I need it to function. Years to find the correct medication. Years to accept my brain is broken and I’m better off taking the medication that works for me.