The Trials of Medication Roulette

                I have recently re-entered the process I irreverently refer to as “medication roulette,” where the balance between relieving symptoms and managing side effects seems to have more to do with luck and fate than anything concrete. Those with chronic conditions will be intimately familiar with the dance of finding the combination of medication, doses, and timing that will suitably treat an ailment. My personal experience is centered in managing my own mental illness, but I have commiserated with so many people who have a variety of illnesses about this process. Medication is not the “easy way out,” and the assumption that someone who requires medication is somehow less strong or less disciplined than anyone else is false and harmful. While medication isn’t necessary or suitable for everyone, I explore how difficult it can be to find and maintain a stable balance in the whirlwind of diagnosis, side effects, symptoms, and stigma -- and why anyone would choose to endure the whole headache in the first place.

            The first stage of medication roulette is recognizing, processing, and accepting that there is a problem that might need medication. This can either be an internal realization or an external intervention. In either case, the “player” is placed in the position of understanding and accepting their coping mechanisms and behavior fall outside acceptable norms and expectations. This process often evokes a sense of failure, shame, and fear.       

                The sense of failure and shame emerge from a variety of sources. At the most basic, there is an internalized stigma that taking medication makes someone less valuable, credible, or reliable. This is reinforced by the symptoms of psychological, neurological, or immune illnesses reflecting traits that are perceived as failings in and of themselves (in my case, impulsivity, perpetual tardiness, and the occasional inclination to stay in bed for a week). Suddenly, the “player” is someone who is sick enough to need medication, as if it were a reliance or a crutch and, therefore, a moral failing; as if taking a pill were an omen of a flawed character. No matter how many times you’re told the contrary, it sticks to your brain, causing a cyclone of thoughts that everyone is feeding polite lies and hidden judgement. All of this self-loathing is stacked against the fear of the medication’s side effects, wondering how much of what you know as your personality might be the illness, and how it will influence your creative drive or focus. Oh, and finally, there is the fear that your symptoms will be dismissed outright.

                All of these negative emotions are in stark contrast to the light at the end of the tunnel – hope. Hope is what gets the “player” past some of the negative. Because, maybe, just maybe, something will make the world easier to deal with.

                Perhaps the most difficult aspect of the first stage is that it can be a recurring process. Especially in the cases where non-compliance or medication resistance is a symptom of the disorder, the “player” might face this stage over and over again throughout their treatment. While the adjustments become less drastic and easier to cope with over time, the first time coming back to the “game” can be incredibly frustrating and demoralizing. The feelings of failure can be amplified by feelings of defeat at not being able to function without the medication, and the perception of smug condescension from figures of authority or people who haven’t been through the cycle. There is also the sense that the “player” is broken beyond repair.

                Stage two of medication roulette is diagnosis. All of the conditions that have medication roulette as an element of their treatment are difficult to diagnose due to their overlapping symptoms and pronounced comorbidity. For example, I initially started treatment for clinical depression in my late teens, while my adult diagnosis is bipolar disorder II. Diagnostic challenges like this are tremendously common, due no fault of the doctors or patients. These diagnostic problems are systemic to seeking affordable doctors and treatments, thus needing a diagnosis in one or two visits; limited insurance coverage for specialists, particularly in mental health support; and the difficulty on the part of the patient for knowing which symptoms are relevant to the current discussion and what even counts as a symptom. I resisted the bipolar diagnosis for a long time because I experience hypomania, which often resembles hyper-productivity and focus, rather than the much more unpredictable, impulsive full manic episodes that many people with bipolar suffer. My depression became so bleak, that I assumed that these hypomanic episodes were just “good days” and I was cycling so rapidly between short periods of hypomania and weeks of depression that I didn’t know there was supposed to be a median experience.

                Diagnosis is costly and invasive. Diagnosing immunological and nervous disorders require a battery of tests, while psychological disorders require survey and observation of symptoms and behavior. Accurate diagnosis can take years while becoming extremely expensive, frustrating, humiliating, and emotionally draining.

                Once the doctor provides the diagnosis, the treatment itself can begin. Even this stage can be wrought with obstacles. Many of the treatments are controlled substances that can be highly addictive, such as opioids and benzodiazepines (e.g. Xanax and Klonopin). Medical professionals vacillate between over-prescribing and under-prescribing these medications depending on the current drug panic, regardless where the “player” is in their treatment cycle. This pendulum swing can cause people seeking treatment to feel shamed by the prescriber or not receive the medications they need to function.

                Finally, there are a variety of medication and cocktails available for these disorders. Often, the core of medication roulette is trying one medication after another based on medications that have worked for close relatives, the potential source of the illness, and the “player’s” previous experiences. Those who have shared their medication roulette experience with me often have a list of medication that they tried and detailed reasons why each was not for them.

                My journey started with being prescribed selective serotonin reuptake inhibitors (SSRIs), such as Zoloft and Lexapro, when I was seeking treatment for depression. Once I realized I needed to treat my mania, I had an awful experience with Abilify, an atypical antipsychotic. The medication caused severe cognitive impairment, I experienced and a profound depressive episode when I stopped taking them without medical supervision. THIS IS NOT RECOMMENDED – always discuss medication changes with your doctor. If I hadn’t had such an amazing support structure, I may not have been here to write this article for you. 

                Finding the right treatment can be a frustrating, overwhelming, and disheartening experience, but finding the right formula is life changing.

                Part of the process of finding the correct formula is experimenting with how much, and when, medication should be taken. My medications cause drowsiness, so I take them at night before bed. Some people are counter-responsive to their medications that cause drowsiness and learn quickly that they should dose in the morning or lunchtime. Naturally, medication schedules vary from person to person and the medications themselves, so part of the process of deciding whether a medication works is changing the time of day it is taken. This can lead the person taking the medication to wonder whether the adjustment period and process are worth the pain of oversleeping, fatigue, loss of appetite or libido, weight gain, or any of the other symptoms that come with being medicated. Determining that a medication isn’t the right one can also take months. Many anti-depressants take up to six weeks to take full effect, while the side effects often appear within the first week or so. These medications also often require a tiered process, which can take weeks, and the only safe way to stop taking these medications is to ween off of them in the same stages. Despite weening, the “player” may still experience withdrawal symptoms, such as worsening suicidal ideation, changes in appetite, mood instability, or tremors.

                While this stage can be devastating, it comes with several important benefits. First, foremost, it is inherent to finding a medication and dosage that works. This stage demonstrates how the patient responds to the medications available to them, and on what schedule they work best for them. This stage also forces the “player” to decide what side effects are worth suffering for relief from their illness. This choice varies from person to person and is often dependent on the types of medication and illnesses. For a very long time, I thought I wouldn’t be willing to sacrifice my cognitive ability to fight my bipolar disorder (and there are many people who continue to make this choice). However, I have come to realize that I am more productive, more comfortable, and more aware when I have accepted what little cognitive impairment I experience when taking my very low dose of Seroquel XR, another atypical antipsychotic.

                The final stage is perhaps the hardest, at least for me – maintenance. After the “player” has made it through the obstacle course of recognizing they need treatment, describing the symptoms to the doctor, getting diagnosed, and finding a medication or cocktail that works for them, they must maintain a regular medication schedule, as it is one of the most important elements of treatment.

                I don’t have a set schedule, so taking my meds within an hour period is nearly impossible – I count myself lucky if I remember to take my meds every day in a week. I use alarms, periodically have friends message me reminders, and my dosing time is before bed. I have gotten worlds better than I used to be, but developing routine and consistent schedules have always been a weakness of mine, as people suffering from bipolar disorder are notoriously non-compliant to treatment schedules.

                This stage is also strongly characterized by constant self-surveillance. The “player” is watching for changes in their moods or behaviors, interactions with over the counter medications and foods, and any potential physiological changes, such as changes in blood pressure, blood sugar levels, and muscular function. The “player” is constantly on watch for how the prescription is affecting their life, and if they are developing a resistance to it.

                While incorporating medication schedules into their routine, the “player” is also adjusting to a shifting identity. Many people have adapted to their symptoms becoming a primary status – they are the person in pain; the crazy, impulsive one; the one who’s always late; the one who can’t get out of bed; the one who always flakes on plans. Taking medication doesn’t automatically change this – if anything, the diagnosis can become the master status, rather than the traits. However, over time, the “player” may be able to shift their primary identity indicators away from their illness or its symptoms and better understand who they are as an individual, while realizing that they do not have to be the sum of their coping mechanisms.

                Adapting to this new identity is further complicated by social groups changing as the “player” becomes less impulsive, better able to create and maintain healthy boundaries, or have more energy to notice and respond to inappropriate behavior. These social shifts may reinforce the fear that the medication makes the “player” less interesting, creative, or talented – particularly in cases where the “player” feels alienated and isolated from social groups they have been a part of for a long time.

                Medication roulette is not a quick or easy treatment plan. It can be frustrating, alienating, and stigmatizing. However, I would relive the entire experience to reach the level of peace, productivity, and control I have today. As isolating an experience as medication roulette can be, know that you are not alone and that there is always hope.