It´s Time to Let Mental Health Survivors Contribute to Improving Mental Health Care
I have been battling with bipolar disorder, psychosis and anxiety for the past thirteen years. It is a struggle that has taken up a lot of my creative energy, a lot of my mental energy, and it has also taken a toll on my body. The average person knows virtually nothing about the struggles that mental health patients go through just to survive, and they know even less about the struggles that mental health patients go through to get treated, even for non-mental health-related illnesses, within the healthcare system. Mental illnesses like bipolar disorder, psychosis, schizophrenia, depression, and anxiety are all chronic illnesses; there is no definitive cure. Furthermore, there is no definitive treatment that has been established to work for every patient. The solutions are literally custom made for each patient, because what works for one patient will not necessarily work for another with similar symptoms. There aren´t a lot of other illnesses out there that have this same profile. If you have diabetes, your doctor knows that insulin will most definitely work to help you. If you have hypertension or high cholesterol, there are many medications that are always one hundred percent effective in treating the disease. If you have a bacterial infection, we know that antibiotics work to cure it. It doesn´t work like that with mental illnesses. There isn´t a one-size fits all type of treatment that will control the symptoms and bring the brain and body back into balance.
Furthermore, there is no consensus in the medical community regarding what causes mental illness. Nobody knows why many mental illnesses so often overlap. Why can someone with bipolar disorder also have psychosis and anxiety? Why does a schizoaffective patient share common symptoms with bipolar patients and patients with schizophrenia? In truth, the medical community doesn´t even know if these mental illness labels truly represent separate illnesses or instead, one giant spectrum of disorder. Finally, the medical community has no idea why one anti-psychotic medication or one anti-depressant medication at a specific dose will work for one patient and not work as effectively, or even work at all, for another patient who has similar symptoms.
Very little can be standardized in patient care for the mentally ill. It is all a process of experimentation, of trial and error, of trying all of the available drug intervention options along with talk therapy options and seeing what works. However, what many people don´t understand is that there is a large cohort of mental health patients for whom drug therapy simply doesn´t work, leaving them in a traumatic limbo that even the best talk therapist cannot talk them out of. Nobody has an explanation for why drug therapy doesn´t always work. And in this situation, most psychiatrists respond by raising the dose of the current medication or adding additional medications to the cocktail until you feel like a super sedated zombie. Moreover, when all the drug therapy options have been attempted without success, many psychiatrists resort to electro convulsive therapy (ECT). Yes friends, that old, horror movie stand-by from the 1930s is still in use today. The manner in which it is administered is more humane these days; most patients are sedated using general anesthesia. But the side-effects, including confusion and memory loss can go on for months afterwards or even be permanent. One might wonder how that is better than the original illness. And for the patients who do respond to drug therapy, one might also wonder whether the side-effects like obesity, high cholesterol, diabetes, high blood pressure, heart disease, kidney failure, thyroid disease, excessive sedation, lowered blood immunity levels and neurological symptoms including ticks, tremors and permanent damage to the central nervous system might also be considered better than the original illness. There is no win-win when it comes to treating a mental illness. We are always giving up some important aspect of our present or future health status to be lucid, capable and functioning in the present, and even then, we are not always successful. There is always a trade-off. And this is in the wealthiest countries that have established healthcare systems with universal access. I can only imagine what the reality is for mental health patients in countries where basic needs like food, shelter, access to education, and health care are not present due to economic hardship and lack of political stability. As an American, I can only imagine what the reality is for the tens of millions of Americans who do not have access to healthcare as we speak.
I say all of this to first come clean and let everyone know that I am a fan of universal healthcare. I feel that it is the best way forward for every country on the planet. Health care is a basic human right that is just as important as free speech, the right to vote, the right to a free, public education, or the right to privacy. And for the love of God, it is definitely more important than the right to bring a gun to church! But putting that debate aside, even within the models of healthcare that do exist currently, I believe that there needs to be real and effective change in the way that we approach mental health care. Yes, more research needs to be done, and not just on the drug therapy side where the special interests of drug companies call the shots. We need to get to the point where we understand the cause-and-effect relationship in mental illness. There are so many theories: chemical imbalances, genetic factors, chronic inflammation, autoimmune diseases. Traditional medicine has touched on all of this, but only in the most superficial of ways. They have never come up with any clear, definitive, incontrovertible evidence for what causes any of the major and most debilitating mental illnesses. So, clearly more work needs to be done on the science part of things.
That being said, the treatment of mental illness also needs to consider how we include the patients in their own care. There is a certain commonly accepted notion in our society, and shockingly including within the medical community itself, that many people with mental illnesses are not capable of making their own decisions, especially if they are experiencing psychosis. It is assumed that they are too disconnected from reality to have preferences or perspective when it comes to their care; therefore, their opinions and feelings don´t matter. Furthermore, if a patient is agitated or anxious, many assume that they are dangerous to themselves or others, and therefore, don´t deserve to make decisions for themselves. The excuses to exclude mental health patients from making important decisions about their care are endless. This type of paternalistic attitude is not as common in other areas of medicine. Nobody would deny a cancer patient from deciding which type of treatment among the viable options they should be given. In fact, it is quite the contrary. Oncologists often spend extra time to educate their patients, discuss the options and possible outcomes, and make decisions together. And of course, side effects are always discussed as part of this decision-making process. Yet, mental health patients in hospital settings are routinely subjected to being medicated against their will, or are not allowed to choose which medication among the appropriate options to take. Given that most anti-psychotic medications have huge, often debilitating side-effects, it should be routine procedure to discuss with the patient which medication he or she has already taken unsuccessfully, and which one he or she prefers. This failure to just medicate without consulting the patient is common even when the patient is in the hospital setting to treat a health problem not related to their mental illness, when they may be already medicated for their mental illness and have it under control, and when they do not pose a threat to themselves or others. Variations of this paternalism also exist in the doctor´s office as well where many psychiatric patients are under-diagnosed for serious and treatable illnesses because the attending physician, when he or she can´t find an obvious solution to the patient´s complaints, simply concludes that the symptoms the patient is reporting are hallucinations or delusions of some sort. Psychiatrists are not excluded from this behavior. Nobody trusts the mental health patient, and this affects the quality of care that they receive tremendously.
What I would like to propose, is that the healthcare community find a way to include successful mental health survivors in the care that is being given to those who are still struggling with their mental illnesses. Just as we have nurses and physician assistants who work in healthcare settings to assist the attending doctors, I am proposing that we hire qualified mental health survivors to assist doctors and psychiatrists in the office setting and to help guide the medical team within the hospital setting. Furthermore, I believe that we should invest in educating interested survivors to step into these roles. Mental health patients need more advocates, and the main role of the survivor advocate could be to support the patient and bridge that gap between what the patient is experiencing and needs, and what the doctor and other healthcare practitioners don´t understand or don´t know how to handle successfully. While all human beings understand and experience pain and discomfort as part of the human condition, not everyone has experienced states of altered consciousness like those that are so common in mental illness. That fact makes it very hard for healthcare professionals to fully empathize with and show compassion for mental health patients, or to consider them credible when they explain their symptoms or what they are feeling or experiencing. While any doctor can use one of the many marvelous medical instruments available to listen to someone´s heart, look into their ears and eyes, or perform endoscopic surgery to resolve a problem, there is no medical instrument that can access the brain of a mental health patient and make sense of it. If you have never experienced visual, tactile, or auditory hallucinations, or if you have never experienced hearing voices, you cannot understand the trauma and distress or the mind-bending sense of altered consciousness that a patient experiencing such phenomena is feeling. If you have never been depressed, you will never fully understand the invisible forces and emotions that might push someone to take their own life. If you have never experienced extreme anxiety, you will be more likely to dismiss someone in your care as being childish or silly. If you have never experienced mania, you will never understand the invincible experience of euphoria. The list goes on, but my point is simply that including people in the care of those with mental illness who have already been through this unique human experience and survived it makes sense. And having a survivor advocate whom the doctor trusts to help them interpret and understand a mental health patient when there is a difficult diagnosis to make, will give mental health patients better access to care and make it less likely that their symptoms will be ignored or disregarded. Furthermore, it will create career opportunities for mental health survivors in which they can use their disability as a strength when it is considered a weakness in so many other fields of work, and it will allow them to act as advocates not only for the patients in their care, but for themselves as well. It will promote a better understanding of mental illness within the medical community and lead to better acceptance of those with mental disabilities in our society. Doctors will learn how to trust their mental health patients more, while also learning how to listen better. It´s a win-win for everyone in an area of medicine where the patients and the practitioners are not always victorious.