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The 'Cost' of Taking Medication for a Mental Illness

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I recently wrote an article on medication and the stigma associated with taking it for a mental illness. People seemed to really resonate with the fact that medication, while not for everyone, can improve the quality of life of people diagnosed with mental illness, but let’s talk about the cost that comes from taking that psychotropic medication.

Here are the side effects I’ve experienced:

Weight Gain: I used to be this really fit, athletic-looking girl. Eight years ago I was placed on psychotropic medication, and ever since it has been a constant struggle with my weight.

Appetite Changes: You can either be really hungry or not hungry at all. Although some people gain weight on psychotropic medication, people can also lose weight and their appetite as a side effect.

Dry Mouth: This is one of the most annoying side effects ever.

Saliva Issues: This is related to the dry mouth. This is something I recently learned from my doctor, as I couldn’t figure out why I was having all of this terrible, sticky, thick, mucous-like spit in my mouth. Spit I literally had to spit out instead of swallow because it would cause me to throw up. Because of the dry mouth, my salivary glands work double time to make more saliva for my mouth. It then turns into the mucousy, sticky, thick spit. It’s, plainly and simply, disgusting.

Sexual Side Effects: OK, so this one isn’t talked about a lot, but it’s just as important. In our personal relationships, sexual intimacy is an incredibly important part of a healthy relationship.  But these meds, these meds we take to keep ourselves sane, can mess with our sex drives. We don’t want to have sex or we have physical issues with having sex due to the medication. That’s never fun, and it’s not fun for our partners either.

Memory Loss: For a while there, I was afraid I had developed some sort of issue, but it was just medication fog. The ability to think, make decisions, problem solve and remember simple mundane things are all affected. It can be short or long-term memory issues. I know how frustrating it is to lose your train of thought in the middle of a conversation or to repeat the same story 10 times to someone.

“Dumbing Down:” Many people often claim they can’t be creative on their medication. I often hear this from other people who have bipolar disorders because when we are manic we are so overwhelmingly creative and the world just explodes in colors and ideas everywhere we turn. When medication is factored in, that manic creativity is extinguished. Things we may have enjoyed previously are no longer enjoyable when we go on medication.

Sleep Patterns: Many psychotropic medications, especially antipsychotics, can be incredibly sedating. This is what people are talking about when they say that psychotropic medication makes people “zombies.”  This is a serious side effect and one I’ve had to learn to work around in my life. When I take my medication, it can vary in the amount of time it takes to kick in and put me to sleep.  Once I take my medication, I have about 12 hours until I’m functional again.  So if I have to be up by a certain time, I need to make sure I take my medication early enough the night before so that I can wake up.  For example, I can’t stay up late and wake up early because if I try to function before my medication has worn off, I become that “zombie” I referred to earlier. Although my medication is sedating, it can also cause some people to experience insomnia and other medication can cause activation in your brain, increasing anxiety and affecting sleep patterns in other ways.

Medication Timing: Trying to figure out the right time of day to take our medication is important to negate as many side effects as we can, however, it can be frustrating to find a good schedule, especially if sleeping patterns and appetite are affected.

Tardive Dyskinesia: This is perhaps one of the most severe side effects of certain psychotropic medications. Tardive dyskinesia results in involuntary, repetitive movements, such as tics and twitches. And the bad news is it doesn’t go away once you are taken off the medication that caused it.

While medication allows people everywhere to live more neurotypical lives, hopefully leading to increased productivity and continued success in endeavors, it also has a lot of really bad side effects that we, those who take these meds, endure.

Some people don’t. Some people try the medication and the side effects are too unbearable or they don’t want to deal with them, so they choose instead to go off their medication. If you choose not to take medication, that is a personal decision. If you find something outside of medication that keeps your mental illness at bay, more power to you — as long as you and everyone around you are safe.

Side effects alone are a huge reason why people don’t take the medication, but there is another barrier and “side effect” of taking psychotropic medication — cost.

As the year winds to an end, I’m encouraging all of my doctors to do whatever it is they need to do, whatever tests they need to run, specialists they need to send me to. You better believe I’m going to get my medication filled as close to the 31st of December as possible.

You see, I’ve been blessed with meeting my max out of pocket. For those of you unfamiliar with that term, it means my family’s medical costs, the portion we have paid, has met the Max Out of Pocket limit under our insurance plan, so now all medical care is covered 100 percent. But that is only good until Dec. 31. On Jan. 1, everything starts over. I have a whole new deductible to meet and then another max out of pocket. I don’t stress too much about it; we usually hit our deductible in March or April.

But here’s what I do stress about — those months leading up to when we hit our deductible. Until we hit our deductible, I have to pay all of my medical costs out of pocket. Of course, I get the contracted rate, but when you are on as many heavy duty medications as me and many people are on, the cost alone is a barrier to obtaining prescription medication. Some people literally can’t afford their medication.

I face the same challenge as many of you. I have to buy my medication on credit cards until I can hit my deductible because my medication is $800 plus a month. Once my family meets our deductible, then my medication goes down to only about $200 a month until we reach that magic max out of pocket number again. When you are someone like me, living on a fixed income as a disabled person, you just don’t have that kind of money.

I’m lucky I have family who helps me with my medication and I have learned little tricks here and there, like getting samples from the doctors, stocking up on a refill as close to the end of the year as possible, and looking for discounts.

But many people aren’t that lucky. Sadly, some people are forced to go without their medication because they can’t afford it. Pharmaceutical companies are price gouging us. They are pricing us out of being able to afford our medication, denying us the opportunity to get seriously needed treatment and ultimately decreasing our quality of life if we don’t have access to our medication. People with life-threatening illnesses are going without medication because of the ever increasing price of it. People with life-threatening illnesses that are treatable are dying or could die because they can’t afford the prices that these companies set for the medication they require.

Tens of thousands of people go without medication or access to adequate mental health care. County mental and behavioral health systems are so overwhelmed that getting services can take months. When someone is in crisis, they just don’t have that kind of time. When someone is in the suicidal grip of depression, the prison of psychosis or in a reckless episode of mania, not getting medical attention can be potentially life threatening.

There are ways to get around these problems. You can look for therapists who take sliding scale payments. (Sliding scale payments are lower fees to assist lower income individuals seeking therapy). You can contact the medication manufacturers, such as Pfizer or Glaxo-Smith-Kline, directly to request patient assistance where they will provide you with the medication for free for a year if you qualify. You can use new methods, such as sites that offer online therapy for cheaper prices. You can go to a Depression and Bipolar Support Alliance (DBSA) support group meeting or National Alliance on Mental Illness (NAMI) class. NAMI offers support for those diagnosed with mental illness and their families. Both DBSA’s and NAMI’s services are free.

But still, even with these options, too many people are going without adequate, effective and timely mental health services and their medication.

People are talking about how physicians prescribe mental illness medication too easily. I believe general practitioners are probably too prescription happy. If you have a mental illness and need a medication regimen or a medication cocktail, you should probably be seeing a psychiatrist.

But therein lies another problem—a shortage of psychiatrists, especially those who take Medicaid or other common insurances. Many psychiatrists are private pay only, and the wait for a psychiatric consult through a community mental health center can be months.

Always remember, though, if you are having a mental health emergency — you can always call 9-1-1 or go to your local emergency room. Many cities also have local mental health emergency response teams (although they can take a few hours to get there) and there are always hotlines. A quick Google search can pull up the numbers in your area.

I wish I had the answers to these problems. I wish I was someone who could just rewrite the whole system to make it so none of us ever went without the care or medication we need. But alas, I can’t.  I am but one voice in a sea of millions. But maybe, if we get enough people and we all put our voices together, we can come up with an answer, a solution to the mental health crisis in America.

Follow this journey on Change Your Season

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Originally published: November 19, 2016
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