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This is the 3rd part of a series on mental health treatment and medications. While the prior two focused on getting into treatment and onto medications, this guide looks at what is often even harder — following through on treatment and staying on medications through doubts and side effects and temptations to reduce effective therapies.
Let me start with a personal story. I take 5 psych meds. One is an anti-depressant, another 2 are for anxiety, a fourth for reducing mood downswings, and a fifth for managing mood variability. That is a lot of medications, but for the past 8 years, they have helped me develop and sustain a promising career, meet and marry and beautiful woman, and show up for my family and step-daughter.
Then one night last month I decided to experiment with lowering one of my five medications by 25 percent. My motivation was that I was planning on eventually coming down on this drug, and I happened to be on an exciting romantic retreat with my wife celebrating our 2-year anniversary. The medication I wanted to reduce is intentionally dulling, as in it lowers sensation and reactivity. But I wanted to experience this weekend to the absolute fullest. So the night after we arrived to our campsite overlooking the Pacific ocean, I dropped from 2 mg to 1.5 mg. I did it without telling my wife or my therapist, because I thought it was within the realm of reasonable experimentation.
The first full day of our trip was marvelous, filled with nature and hiking and scenic vistas and waterfalls. I loved the day. After we returned to camp we enjoyed red wine in camping cups and looked out at the sea. Then we went up to the nearby restaurant for dinner. Perched on the cliff’s edge we looked out at whales spouting water and the sun slowly dropping below the red and golden hues of the sky. Then the salad came.
I can’t explain in rational terms what happened next, but a visceral disgust overtook me. I was assaulted by the look, the smell, the very presence of that mundane garden salad with its wet cucumbers and shredded carrots, watching my wife pick out pieces of curled lettuce with her fingers, the waft of sickening vinegar dressing. I tried to avert my glance. I felt nauseous. I thought I was going to throw up right on the outdoor deck of the restaurant.
That’s what a 25% change in 1 of 5 medications did to me. It rendered my senses so hypersensitive that it short-circuited any rational sense of stability, and I knew I had gone too far. It terrifyingly reminded me of how life used to feel each day before taking any meds. Fortunately, I still had the insight to admit to my wife what I had tried, and she knew it would be best to return to our sleeping bags and let me calm down. That night I went back up towards my regular dose. Within a few hours I was able to engage. The next day was fine. The following weeks were totally normal. I got lucky.
The temptation, sometimes even the compulsion, to reduce medications is extremely strong. In the following guide I want to look at many different perspectives on why staying on medication and not lowering your dose is often the best option, at least in the short and medium-term, and sometimes for the rest of your happy, healthy and meaningful life.
- Main effects vs. side effects. One of the biggest complaints with psych meds is what else they do besides reducing the symptoms of a mental illness. Side effects can range from restlessness and insomnia, inability to orgasm and fatigue, to mental fogginess and weight gain. These are not trivial, but they need to be put into their proper context. Side effects are called that because they exist alongside main effects, the reduction of primary symptoms of a disease. Main effects can include suicidal thoughts, debilitating anxiety, delusions, and wild mood swings. People on medications often fixate on side effects and forget that those side effects only arise because you are addressing the real, deeper, underlying problem. It’s the main effects that are most critical, and side effects must be a secondary consideration in serious mental illness.
- The three diseases. Mental illness is actually a trio of challenges or disorders. There is the original condition, the compilation of symptoms that destabilized and endangered a person. Second, there is the challenge to accept the disease and stop denying it exists or believing it will just go away. Last, there is the the desire and even obsession with lowering meds and effectively reducing or stopping treatment for the main condition. Any consideration of a person’s mental health needs to look at all three components, because they work in tandem and often fail when not in sync.
- Rejecting the main symptoms. A person who is on treatment for a mental health condition often comes to reject the symptoms that brought them to treatment in the first place. The negative mental chatter, the self-harm, the irrational fears, or distorted hallucinations — once properly treated with meds — become a source of myth. They are past. They were not really you. They were just an episode. They don’t count anymore. They are no longer possible. This, simply and sadly, is often a kind of fundamental denial.
- Accepting the disease. At the core of any illness is acceptance. Not the kind of weak surrender, but the bold and responsible acknowledgement that something about the way your brain or body works results in harm to you and your functioning way of life. Accepting a mental illness can seem like giving up, or settling, or even flat-out failure. But acceptance is deeply empowering. Once you allow for the possibility that you need to build your life on top of an unchangeable set of conditions, you can learn to play the best cards in your hand in the best way. Acceptance is the beginning, the precondition for optimizing your present and future.
- Life within a zone of stability. If you were going to climb a mountain, you’d be unwise not to use ropes and to clip in to the metal hardware along the route. After all you’re going out on a limb, risking falls, and taking chances. The climb is life, and it is an exciting but unpredictable state of being. There are falls and setbacks and mistakes and completely human failures. Staying on meds is staying tied into your ropes, so that when you misstep or lose your grip, you are caught and supported rather than plummet to the ground. Meds are what create a zone of safety and stability — so that you can venture outward and climb on.
- Then vs. Now. There’s a simple fallacy once main symptoms are managed: false security. In other words, if the symptoms are gone, then you don’t need the treatment anymore. While this is sometimes the case for short-term or situational challenges, more serious and deeply ingrained illness doesn’t just vanish. It’s so easy to look at your renewed and improved life and think, “I’m good now, so I’m going to stop taking my meds.” But it’s often the meds that are the reason you got to where you are, why you are feeling good again, and what is preventing you from backsliding into that place of despair or dysfunction. Meds are a necessary condition of your feeling good now, and removing them would take away the positive effects that feel so entirely present. But the present is a result of what you have done to treat your symptoms.
- Fooling doctors. This is a tricky one, because trust in doctors is essential to treatment. But I need to be honest, that doctors can be fooled in two ways. The first way doctors can be fooled is seeing you when you are nice and happy and stable on your medications. Even doctors can fall into the then-vs-now trap, because a new doctor may never have seen you at their worst. They didn’t see the struggling you, and they want to believe that you are capable of change. What they may miss is just how horrible your life was before. The doctor who saw you in the hospital would know you very differently than the new psychiatrist you see once a month after you’ve been stabilized. The second way a doctor can be fooled is if you always present your best self to them. It’s natural to want to improve, to please, and to show how much progress you’ve made. But are you giving a complete picture to your M.D.? Are you telling them not only how much better you’ve gotten, but also the symptoms that still linger or have returned? Are you admitting to them how unbearable your life was before treatment? Are you talking to them about the fears and risks of falling back into those patterns? If you only show doctors the upside, they may believe that is the real you, when it’s actually only one freshly polished side of the coin.
- The slippery slope of meds reduction. I admit that in some cases, it’s entirely appropriate to taper down medications under the supervision of a trained clinician. But, there is always a risk of relapse. In some cases you get to ‘titrate’ down your dose and evaluate how you are doing along the way. In other cases, your meds can get low enough that you simply lose the insight to honestly judge how you are doing. You can go too far. You can lose control of your ability to keep control. You can spiral downward. It’s important to be serious and even skeptical of your own ability to reduce your medications. You are the reporter of how it’s working, but your objectivity can disappear as your meds lower — so you need to question if you can remain unbiased even if your plan is not working. And you need a backup system in place if you pass your limits and start to go downhill fast.
- Need to pause. Because lowering meds can be a slippery slope you often need to simply pause — stop right in your tracks — and wait. This can be frustrating if you are full of hope, but it’s essential to tracking the return of your main symptoms. There is no rush to lower meds. Life is long. Your illness may be with you in some way for years or even decades. Managing and balancing your medications doesn’t need to happen on a set time-frame and going too fast is often dangerous or simply unnecessary. If the downside alternative is falling back into your worst self, then take time and make sure you’re going to get it right.
- Going back up. There’s a false prophecy that if lowering your meds a little worked, that lowering them even more is better. You can get to a point where in your experimental reduction of meds, symptoms are starting to pop back up. And this is where you need to do something seemingly unthinkable: you need to go back up on your meds. Recovery sometimes seems like a one-way path to improvement, but it’s not. It’s an obstacle course filled with wins and holes. If you are past your point of control, then you need to backtrack so you can keep going forward safely.
- Hidden symptoms. How healed are you? Do you still get passing thoughts of self-harm or moments of despair? Are you occasionally hearing voices or denying yourself healthy options? Recovery doesn’t mean the erasure of every instance of your symptoms; often management is the goal and not a 100% cure. So when you look at and present your life, are you hiding some of the pieces that run counter to your narrative of self-improvement? If so, before you lower your meds, you should really focus on those lingering symptoms. In a way, you have to earn the right to come down on meds and that means doing the work to make sure it will be a positive and safe choice.
- Trusting yourself? A common refrain of all people, and especially those whose lives are disrupted by mental illness it that they need to be able to trust themselves. After all, what is the point of life and recovery if you are hobbled and full of doubt? But trust is a very tricky thing, and it’s not an absolute. You can trust yourself in some areas but not in others. For a person with a history of mental illness, you may be entirely trustworthy in your relationships, or your career, or your education — and not in your subjective appraisal of your worst symptoms. They can creep up on you. You can be unaware, or neglectful, or fully in denial about them. This is not a failure of self — it’s simply a human reality that we all have blind spots. You can trust yourself, but that means knowing where you need extra help, and where can’t trust yourself alone or fully.
- Having a team. One of the best ways to get a more accurate view of how you’re doing is to have not just a doctor but a whole treatment team. In boxing, a fighter will have someone who works on diet, another who focuses on defense, a third on fitness, a fourth on strength, a fifth on strategy, and a sixth overall manager… you get the idea. Not only does the boxer not fight alone, they rely on a multitude of teachers and trainers and coaches. You can and often need to be like this too. Your treatment team can include your psychiatrist, your therapist, your primary physician, your friends, your parents, your coworkers even. You can take in all of their feedback as valuable data. This doesn’t mean you are out of control; it’s more like giving up a little control in the short-term to stay on a long term path of maximum control. Great fighters never fight alone, and you shouldn’t either.
- Consider the risk to yourself. A truck filled with heavy boulders going up a steep hill doesn’t inevitably make it over the top. It needs good traction and a full tank of gas, an alert driver, and a strong engine. If you take out a critical part of the equation, the truck can stall and slide back downhill. It’s a hard but mature realization that choices entail the risk that you make the wrong choice. Lowering or stopping medications means a real risk that you need to weigh. You might make it over the top, but what are the odds, and what would you do if you start rolling backwards?
- Freedom of choice means freedom to choose wrong. A sense of meaningful control is essential to feeling like life has purpose and possibility. The ability to choose how you manage your mental illness is an important component of your recovery. You should feel in control of how you handle this difficult aspect of your life. But being in control and getting to choose comes with immense responsibility to make good choices. Freedom to choose isn’t a guarantee that you always choose correctly. Being in control sometimes means knowing your limitations and being in control of when you stop lowering medications or even raise them. That’s real control, and it means considering all options.
- The addiction of avoiding treatment. This is a hard one to admit, because mental illness is hard enough. It’s odd then that people on meds often feel a strong pull, or even a compulsion to get off of them. They may miss their ‘real’ selves, or the ‘highs’ and ‘creativity’ they felt. They may associate meds with being ‘trapped’ or ‘controlled’. It may feel like the path to freedom and happiness is less meds or no meds. In some cases, the desire to avoid medications is as powerful as the temptation an alcoholic feels to abuse drugs. It can seem like the only thing between you and paradise, or at least success, or real happiness is getting off your meds. Is that true? Or are you actually motivated by a drive you’re not fully aware or in control of? Are you addicted to coming off your medication? Have you tried before only to relapse and wind up back under your bed covers or in a hospital or out on the street? Are you denying evidence that you need meds to be your best possible self?
- Imaginary selves. Any time something external intrudes on our life it’s easy to identify it as the source of all of your problems. It’s easy to think, “If only I wasn’t on these medications I would feel more confident,” or “I could get a job if I could just lower my dosage.” There may even be a kernel of truth in these mountains of hope, but most often the reality is that the side effects of medications are outsized in your mind and only slightly relevant to your real wishes. This is a fallacy of causation: you may be unfulfilled and taking meds, but that does not mean taking meds is the true source of your dissatisfaction. It could be entirely the opposite: that taking meds is setting you up to even have a chance at getting what you really want.
- Tolerating the side effects. Nothing here is denying that side effects suck. They can really cramp your style, dampen your mood, interfere with your plans, and sometimes limit your capabilities. They can make you lethargic, constipated, less able to partake in activities, or just damn chubby. It’s not easy being on serious psych meds, which is why so often people can maintain the treatment regiment that eased the main symptoms of their condition. Side effects are the cost of treating your disease. Your goal, and your job is to learn to minimize the side effects and at times just learn to live and move around them. If you gained weight, you may need to adjust your diet or exercise more. If you’re tired, you may need to cut back on work responsibilities or take more naps. If you’re lacking mental sharpness, it may not be possible for you to tackle the most complex problems anymore. There are sacrifices and compromises to be made along the way. Remember that your choice is not between more side effects and no side effects. Your choice is between more side effects and more symptoms of your main mental illness.
- If it was cancer. People with mental illness often view themselves, or are viewed by others, as having a fundamentally different type of problem. Something internal, intrinsic, or personal. In truth, most mental illnesses have a strong neurological and biochemical basis in the brain and nervous system. Consider how you would react if your condition wasn’t depression or bipolar disorder but cancer or diabetes. Chemotherapy sucks, but it’s generally better than cancer ravaging your body. Cutting out sugary treats is a bummer, but it’s a fair deal compared to losing your feet or needing gall bladder surgery. Your mental illness is, in addition to a very personal psychological condition, also a medical reality. If you wouldn’t skip chemotherapy and insulin injections, you should also hold tight to the medication regime that is keeping you stable.
- Doing it the natural way. Some people view meds as fundamentally “unnatural”. This may come from a preference for holistic, herbal, homeopathic, and alternative medicine or energy healing. It may just be a dislike of drugs and “chemicals”. I don’t have anything against Chinese medicine or Ayurveda or Herbs. But the key is that these treatments should be a complement to your meds. Go to acupuncture — and take your meds. Get a cranial-sacral massage — and take your meds. Supplement with Astralagus and Ashwaganda — and take your meds. Treatment is not an either/or proposition and to be literal about it, everything in your body and in the world is a chemical composition of atoms and elements and molecules in some way. Psych meds aren’t magically different, just like alternative treatments aren’t mythically successful.
- It’s not fair. I want to be really, compassionately, loving clear: none of this is fair. It’s not fair that your brain went haywire, or your your emotions are out of your control. It’s not fair if you can’t stop certain behaviors or hear things that aren’t there. It’s not fair that you suffered from your symptoms, struggled for months or years because your condition, or lost friends and jobs along the way. It’s not fair that you have to take these drugs that insult, frustrate, constrain, or dull you. It’s not fair that you have uncomfortable side effects. It’s not fair your doctor or family scrutinizes your behavior. It’s not fair that there is social stigma about mental illness. It’s all really not fair, and I am totally, completely, genuinely sorry for it. Truth be told, however, none of that has anything to do with the basic choice to stay on or lower your medications. Unfairness is the starting point here; it’s not an excuse to make an irresponsible choice.
- Remember rock bottom. Sometimes you have to take a break from your great and inspiring, brave or incremental recovery. Sometimes you’re ascending a ladder into your full potential, and you have to look down. You have to look back at how far you’ve come, which is the flip side of looking at how far you could fall again. You have to remember the most unbearable, embarrassing, painful parts of your past when you were beyond hopeless or blatantly detached from reality. You have to remember rock bottom. I hate to say this, but you can hit it again; you could even go deeper next time. Recovery is not guaranteed.
- Dead, jailed, homeless, or hospitalized. This may seem extreme, but for some people it’s a simple truth. Going off medications can have dire consequences including losing your life, winding up in prison, living on the streets, or being involuntarily confined in a mental institution. Your life can be much better, but it can also be much worse. Are your meds, which you love to hate, keeping you from those awful outcomes? If so, you might have to accept them even with begrudging appreciation.
- It’s not recovery without resilience. Let’s say your symptoms are gone for now, out of sight. You’re feeling good and behaving better than you can remember in ages. It may seem like that’s a good time to cut out those pesky meds. This is a critical juncture, and it’s easy to think you’re out of the woods if your recovery is going well. But like that mountain climber who has never fallen before: you don’t know if your rope will catch you and hold. Have you been exposed to enough stressors and triggers to know that if you start to wobble you can regain your balance? Have you demonstrated not just recovery from symptoms but resilience against those patterns coming back?
- Focus on the direction not the prescription. It’s easy to become obsessed with one aspect of your existence with mental illness. Too often, that intense focus goes to the thing with a number that comes pressed into a pill you swallow at precise times of the day. Meds are important, sometimes vital, but they are not the story of your life. Rather than think about your value and existence in terms of which drugs you take and how much of them, think about the long arc of your whole journey. It should be filled with friends and laughter and nature and hobbies or passions. Maybe romance, or a career, or children. You could contribute as a volunteer, or make art, or simply take good care of yourself and find pleasure day-to-day. This is what makes up life — not an Rx.
- Remember the burden on others. You’re not on this journey alone. While you’re the main character in your story, and you own and have to live your existence, what you choose can have real and often harrowing consequences on those around you. This isn’t a guilt trip; it’s a reality check. When you lose control from going off meds, other people often pick up the pieces. It could be your boyfriend who has to endure your temper, or your mother who has to visit you in the hospital. It could be your friends who worry where you disappeared to, or your community that suddenly lacks your lovely presence around town. Part of having a team means that people are rooting for you but also hurting with you, and sometimes picking up the pieces when you fall apart. Focus on your journey, but keep in mind that you’re not a solo actor in this web of life.
- You’re good enough. I don’t know how to say this in a way that will sound convincing, but I will: you’re good enough. Even with your underlying illness, or your daily medications, your imperfect personality, or your sense of failure: You. Are. Good. Enough. There is no perfect destination, and wherever you are on the path of recovery, it’s really ok to just find peace with it. Sometimes the only way to stay sane is to accept the instability that lies underneath your stability. Sometimes the only way to feel good about yourself is to accept that you’re doing the best you can and that’s enough. Even with everything you’d love to change or wish were different, there’s nothing wrong with your life. It’s ok as it is, and so are you.
- Gratitude. How can you feel so imperfect, or have struggled so much and still be thankful for your life? More than just realizing that ‘it could be worse’, there is a real gift in taking the time to acknowledge, appreciate, and even relish the support you have or the simple joys you’ve regained. How does it feel to wake up in your own bed and not be wearing a hospital gown? How does it feel to be able to go outside your house and not have it take all of your energy? How does it feel for the voices or thoughts in your head to not distract you from sitting and enjoying a conversation with someone who is genuinely interested in and loves you? These are all moments for simple gratitude, and I promise that gratitude is a gift that gives back to you. It gives hope for even more to be grateful for. It gives peace of mind. And that is no small thing to have.