The Challenges of Choosing (and Sticking with) Treatment
There are so many difficulties with mental and chronic illness, and not the least of these is how we manage them. We are inundated with advice and solutions, but a lot of it misses some of the core challenges with treatment in the first place. I want to explore some of why it's so hard to seek treatment and to keep up with it. This is not to keep people from trying medication. I want to give a voice to all of the things people who do seek (and continue) treatment overcome. I largely focus on medications, as they're a very tangible element of treatment, but many of these also apply to therapy, exercise, and procedures (such as surgeries, hormone treatments, ect, or tms).
Do I even need help?
One of the hardest parts of seeking treatment is recognizing that there might be a problem to begin with. Seeing there's a problem isn't just recognizing how symptoms are affecting you, as the ill person, or the people around you. It can be really hard to realize your experience isn't normal, especially if your symptoms started early, are incremental, or can be chalked up to aging. One of the reasons I didn't realize I was developing my nerve and/or autoimmune disorder (I'm still in the diagnostic cycle) is because I thought "your back aches and your joints creak after 30" was the same as "my hip freezes if I drive for more than half an hour and my back seizes on a regular basis."
We are often told to second guess ourselves and many doctors don't take pain symptoms seriously, especially in people of color and women (or woman-bodied people). We aren't taught how to tell the difference between being tired and being exhausted. We aren't taught the differences between sadness and depression, hyper and manic, "active imaginations" and delusions. While there are more conversations and resources about the lines, it's still very difficult to determine when to actively seek help.
Stigma & Self-Identity
There is a bizarre overlap in mental illness stigma and romanticism.
Many of the Google results suggest that the romanticism is a new phenomenon, but I would argue that the "crazy artist" and "eccentric genius" tropes have been inundated into our social conscious. You can hear it in how people talk about Van Gogh or Edgar Allan Poe. I spent a lot of my youth wishing I would have the insight they had, and, somehow, the thread I found was that my favorite artists were mentally ill. I suppose I got my wish, and once I realized that it was a reality, I was terrified that treatment would limit my creativity or stifle my personality.
That romanticism is fundamentally linked to the stigma - there's this assumption that being medicated means you're cutting off some part of yourself, or that you are being inauthentic. I was lucky enough to be raised in a home where mental health medication was normalized, but I still had a hard time accepting that I would be taking a pill (possibly more) every day for the rest of my life. Diagnoses come with relief and validation and treatment plans, but they also come with a lot of assumptions - both internal and external.
Fear
There's so much about treatment that is terrifying. We are so aware of medication roulette and how devastating adverse effects can be. Many of us are worried that if we're truly honest about our experiences, we'll be institutionalized - especially if we have suicidal ideation or any kind of delusions. We worry about judgment and that our issues are worse than we thought. We worry that we will be accused of just "attention-seeking" behavior.
And then we start the diagnostic cycle. Many of us - whether chronically ill or mentally ill - are misdiagnosed for at least a portion of our treatment. That adds an entirely new dimension to the fear of being medicated, as many treatments have effects that last far longer than the time you're actively taking them. We fear, as I said above, that we'll be cutting off some vital part of ourselves, that we'll lose what makes us "special." This can become self-fulfilling when our symptoms include recklessness or impulsive behavior and we are suddenly less fun than we used to be.
Complex diagnoses, Misdiagnoses, and Futility
There are so many overlapping symptoms and so little knowledge of their sources. There are connections between physical and mental health that are rarely acknowledged due to our fragmented health care system (honestly, how often does your psychiatrist talk to your general practitioner? Or your dentist? Or any of your care providers talking with each other?). Is my fatigue from my bipolar and major depressive disorders, my vitamin D deficiency, potential hypothyroidism, potential autoimmune disorder, or because I keep my schedule like I have 36 hours in a day (look - it's really hard to pace myself when I'm always tired, anyway)?
Sometimes, symptoms are masking other, more severe and pertinent symptoms and it takes time to work toward. Sometimes, the treatments for different disorders are counter-indicative (meaning they cause problems or become ineffective when taken together). Sometimes, you need to take medication to manage the side effects of your medication. Sometimes, being on the wrong medication can severely impact your life. I took a medication that caused severe enough cognitive impairment that I'm reluctant to return to teaching after 4 years away (and off the medication).
It's exhausting and can often feel completely futile. It's especially difficult while you're getting started. Many medications take weeks or months to show their effectiveness, while their side effects and adverse effects happen almost immediately. It's impossible to know which side effects will last. It's tremendously simple to just accept your illness as a way of being to avoid all of that.
But I'm Better
I spent most of my 20's yo-yoing between taking medication and not. I had convinced myself that I only need antidepressants to level me out and I would be fine once that happened. As soon as I felt healthy and stable, I would stop taking my medications. Naturally, my symptoms would re-emerge and led me into a self-destructive spiral. I would take my meds for another year or two, then decide that I was better.
Spoilers: I was not better.
I think this is linked to the thought that illnesses are supposed to be cured. Being sick is supposed to be a temporary thing and medication is supposed to fix the problem after a short time. This isn't a reality for so many people.
Access
One of the biggest barriers to treatment is access to healthcare. Mental health is expensive and insurance rarely covers it to the extent that mentally ill people need (I can only speak for the state of US healthcare). When I was deciding on my coverage through the ACA marketplace last year, I specifically sought plans that covered my prescriptions. Many more people don't have access to insurance, especially if their state did not expend Medicaid when the Affordable Care Act was implemented. Part of my medication fluctuation in my 20's was also funding. Many doctors want to meet at least every three months to check in and refill the script, but that's both expensive and time-consuming.
Our wait times are also astronomical. It's not uncommon to wait several months to see a general practitioner, especially as a new patient. In my experience, counselors and psychiatrists are often booked several months out, as well. Many people resort to using emergency rooms for treatment, especially when they lack health insurance, but do not get the extended care they need to become well.
Many of us are also battling the tightening regulations on controlled substances, such as benzodiazepines (such as xanax), amphetamines (such as ritalin), decongestants (specifically pseudoephedrine), and opiates (which are commonly used for pain management). These regulations are designed to limit access to people who would abuse the medications, but also put immense pressure on those who need them to function. Several of my friends who have ADD describe going to multiple pharmacies to find someone who would even be willing to fill the script.
All of this assumes, of course, that you have a doctor that you can even get to. If you don't drive, or your doctor isn't near public transit (a strong likelihood in the US South), you might not be able to get to an appointment without the additional cost of taxi or ride-sharing fare.
Seeking treatment is one of the hardest things many of us will do. Accepting that we need help, that all of this hassle is actually worth it, that our lives are more fulfilling with treatment is difficult. It's difficult to start. It's difficult to maintain. I'm so glad I'm taking the steps to manage my illnesses, but it was a long road and I still have a long way to go.
That romanticism is fundamentally linked to the stigma - there's this assumption that being medicated means you're cutting off some part of yourself, or that you are being inauthentic. I was lucky enough to be raised in a home where mental health medication was normalized, but I still had a hard time accepting that I would be taking a pill (possibly more) every day for the rest of my life. Diagnoses come with relief and validation and treatment plans, but they also come with a lot of assumptions - both internal and external.
Fear
There's so much about treatment that is terrifying. We are so aware of medication roulette and how devastating adverse effects can be. Many of us are worried that if we're truly honest about our experiences, we'll be institutionalized - especially if we have suicidal ideation or any kind of delusions. We worry about judgment and that our issues are worse than we thought. We worry that we will be accused of just "attention-seeking" behavior.
And then we start the diagnostic cycle. Many of us - whether chronically ill or mentally ill - are misdiagnosed for at least a portion of our treatment. That adds an entirely new dimension to the fear of being medicated, as many treatments have effects that last far longer than the time you're actively taking them. We fear, as I said above, that we'll be cutting off some vital part of ourselves, that we'll lose what makes us "special." This can become self-fulfilling when our symptoms include recklessness or impulsive behavior and we are suddenly less fun than we used to be.
Complex diagnoses, Misdiagnoses, and Futility
There are so many overlapping symptoms and so little knowledge of their sources. There are connections between physical and mental health that are rarely acknowledged due to our fragmented health care system (honestly, how often does your psychiatrist talk to your general practitioner? Or your dentist? Or any of your care providers talking with each other?). Is my fatigue from my bipolar and major depressive disorders, my vitamin D deficiency, potential hypothyroidism, potential autoimmune disorder, or because I keep my schedule like I have 36 hours in a day (look - it's really hard to pace myself when I'm always tired, anyway)?
Sometimes, symptoms are masking other, more severe and pertinent symptoms and it takes time to work toward. Sometimes, the treatments for different disorders are counter-indicative (meaning they cause problems or become ineffective when taken together). Sometimes, you need to take medication to manage the side effects of your medication. Sometimes, being on the wrong medication can severely impact your life. I took a medication that caused severe enough cognitive impairment that I'm reluctant to return to teaching after 4 years away (and off the medication).
It's exhausting and can often feel completely futile. It's especially difficult while you're getting started. Many medications take weeks or months to show their effectiveness, while their side effects and adverse effects happen almost immediately. It's impossible to know which side effects will last. It's tremendously simple to just accept your illness as a way of being to avoid all of that.
But I'm Better
I spent most of my 20's yo-yoing between taking medication and not. I had convinced myself that I only need antidepressants to level me out and I would be fine once that happened. As soon as I felt healthy and stable, I would stop taking my medications. Naturally, my symptoms would re-emerge and led me into a self-destructive spiral. I would take my meds for another year or two, then decide that I was better.
Spoilers: I was not better.
I think this is linked to the thought that illnesses are supposed to be cured. Being sick is supposed to be a temporary thing and medication is supposed to fix the problem after a short time. This isn't a reality for so many people.
Access
One of the biggest barriers to treatment is access to healthcare. Mental health is expensive and insurance rarely covers it to the extent that mentally ill people need (I can only speak for the state of US healthcare). When I was deciding on my coverage through the ACA marketplace last year, I specifically sought plans that covered my prescriptions. Many more people don't have access to insurance, especially if their state did not expend Medicaid when the Affordable Care Act was implemented. Part of my medication fluctuation in my 20's was also funding. Many doctors want to meet at least every three months to check in and refill the script, but that's both expensive and time-consuming.
Our wait times are also astronomical. It's not uncommon to wait several months to see a general practitioner, especially as a new patient. In my experience, counselors and psychiatrists are often booked several months out, as well. Many people resort to using emergency rooms for treatment, especially when they lack health insurance, but do not get the extended care they need to become well.
Many of us are also battling the tightening regulations on controlled substances, such as benzodiazepines (such as xanax), amphetamines (such as ritalin), decongestants (specifically pseudoephedrine), and opiates (which are commonly used for pain management). These regulations are designed to limit access to people who would abuse the medications, but also put immense pressure on those who need them to function. Several of my friends who have ADD describe going to multiple pharmacies to find someone who would even be willing to fill the script.
All of this assumes, of course, that you have a doctor that you can even get to. If you don't drive, or your doctor isn't near public transit (a strong likelihood in the US South), you might not be able to get to an appointment without the additional cost of taxi or ride-sharing fare.
Seeking treatment is one of the hardest things many of us will do. Accepting that we need help, that all of this hassle is actually worth it, that our lives are more fulfilling with treatment is difficult. It's difficult to start. It's difficult to maintain. I'm so glad I'm taking the steps to manage my illnesses, but it was a long road and I still have a long way to go.
Comments
Post a Comment