I have found a few resources on life with mental health issues without meds since I have chosen to stop taking those prescribed to me, and refuse to return to them for anything more than the occasional PRN (as needed). I feel lucky that I have a family that supports my decision (backed by my continued over-all improvement). I know that even if doctors or the courts were to try to force me into it, my family would stand up and fight for my right to refuse any treatment I disagree with… Some people don’t have that support.
I was reading a blog on the coercive and abusive nature of the psychiatric industry here in the US. While I experienced some of that living up north, I see more of it down here. When I had sought help last week in the form of a brief inpatient stay, I was told by the psychiatrist that “people can’t be in the hospital without meds!” I agreed to let him prescribe something for sleep and something for anxiety (though he only wrote the sleep script, and I refused it 2 out of the 4 nights I was there). Meds can have a time and a place, as I really needed something to help with the flashbacks Saturday night after they had restricted all my other coping skills while there (I was unable to talk to anyone without being blamed or preached at, I was not allowed to watch TV as they had “closed” the day room for the night, I could not call my wife before they closed the day room because I could not make a long-distance outgoing call, and no one was willing to make it for me, I had no access to music, I was not allowed to draw or write because it was “too late”… that left my option at: continue to escalate my discomfort with the flashbacks or take something to knock me out… I opted for the meds. I’m pretty sure they do this on purpose to keep people reaching for the pills). I watched more than one patient get drugged to the hilt because they were agitated or annoying (one man was on 100mg of Haldol shots every 4 hours because he was mischievous (just to give you an idea of how much that is, the guy was similar build to me, but if I were to take 5mg pill of Haldol, I would be out for 3 days… they gave him 20x’s that every 4 hours), but really, what do you expect us to do when you only provide entertainment/engagement for max 4 hours out of a day. There is 1 TV for 18 people, and if you don’t happen to like what’s on when someone else picks the channel, you are stuck being bored). There are 3 phones, but you can’t really call out (and how much time can one person spend on the phone anyway, especially when 17 other people are also trying to communicate with people). Access to books, art supplies, music, and supportive others is severely limited. Staff are short-tempered because they are burnt out and working with limited resources… So yeah, they medicate people to shut them up. It’s easier to deal with a unit full of drooling, asleep patients than it is to try to provide even brief therapy. Psychiatrists admit that most meds do not take full effect for several weeks, but they discharge patients after a few days of “stabilization”… So how are those meds really helpful at that point?
Once again, I’m saying our mental health system needs an over-haul. I think we need more focus on therapy and providing social supports for people. We need less focus on lining pharmaceutical companies’ pockets with cash. We need to listen to people. We need to hear their stories and help them work through whatever it is that is causing this pain. Meds can be used primarily as short-term interventions, but ultimately leave it up to the patient to decide. I hate when a provider asks “Do you think the benefits out-weigh the side-effects?” because they never want to hear “no”. They only say that to make us feel like we have a choice, and are choosing to feel better by taking meds. The truth is, most of the side-effects are not less hazardous or annoying even when weighed against the “benefits.” Is feeling numb or drugged or insatiably hungry all the time really better than feeling waves of incredible depression? To this day, I maintain that I have more control over myself and my impulses without medication. The years since coming off them have proven that. I no longer move to OD or attempt before I ask for more support. I can think clearly through problems, and easier identify poor lines of thinking (even if I don’t necessarily work to change them at the time). The few times I have taken even sleep or anxiety meds this past year, I have found my mood is exponentially more labile and uncontrolled. I get irritable and lash out without a thought to the consequences of my actions. A few days after having taken my pill, I find I blow up without provocation. Once the meds have been processed from my system, I am back to my “normal” self – able to control my temper, which I had never had a problem with before starting meds. That processing time by the way, it’s much longer than they tell you. Doctors will say many of the meds leave your system in a few days after stopping. The truth for me is that they affect me much longer. Trazodone, when used for sleep, is supposed to wear off within a day (according to numerous psychiatrists and a few of my therapists). It takes my body up to a week to get rid of the effects of having taken it only once. The longer I take it, the longer the effects last in my system. The last “regular” med I took caused my body to withdraw from it for months even though I had only taken the med for about 3 weeks. The over-all expected effect may wear off faster, but the side-effects and withdrawals can last much longer than they tell people.
Sadly, the mental health system is coercive in more ways than simply pushing meds. In FL, you can be Baker Acted for simply “appearing to have a mental health problem”. This means that a person can be held in a locked psychiatric facility for up to 72 hours while professionals decide if you actually are a danger to yourself or others. Many times, they will medicate first, and make the decisions later. If you refuse meds, you are considered “resistant to treatment” or “non-compliant” and can be deemed “problematic”. Those labels will then increase your chances of being held longer. The doctor at my most recent hospitalization made it clear that if I chose to refuse even the prescription of medication, I would be held under the Baker Act until I “accepted the help.” Prior to my voluntary hospitalizations in SFL, I was involuntarily hospitalized several times (a few without merit, but since the psychiatrist was not on the DBT bandwagon, she deemed me a danger to myself and I was hospitalized for 7 days. Had she bothered to look into the DBT goals, she would have realized that I had accomplished a lot that weekend and not actually been a danger to myself because I held things in check). I was also threatened with being forced into ECT treatment after I refused to undergo the procedure voluntarily. The doctor bullied me and threatened me (while I was involuntarily hospitalized under his care) for 5 days before he could not find other psychiatrists to concede I was incapable of making my own decisions. Had I not felt as strongly, and not been as educated about my current condition and the uses of ECT, I would likely have given into his tactics just to shut him up (I guess being terrified of my dad for all those years, then learning to stand up to him, helped me stand up to this jerk). There were times during his tirades that made me wonder about his own sanity. When asked to provide studies and evidence that proved ECT was effective in treating addictions, or actually recommended for abuse/child sexual abuse trauma survivors, he told me it was my responsibility to look that up myself (please keep in mind he knew I had no access to journals, the internet, or any research information while on this locked unit, but still felt I should be the one looking it up). It made me wonder if there was any evidence at all to back his claims. I asked my family to look it up for me, and then I continued my search once out of the hospital. I have yet to find any articles (peer-reviewed case studies or scientific research) proving that he was correct. I had found several articles saying that ECT was in fact contraindicated for abuse survivors, but not a single one saying it was more help than hurt. I had to fight this battle against a “professional”.
I think a huge problem today is that we, as providers, have fallen into a rut with our available treatments. Money talks, and no insurance company is willing to pay for novel treatments. There are very few funding sources for research into any new treatments, and large-scale studies need funding. Students and researchers need to live after all. They need to support themselves, their families, and their work. They need people to take risks in backing the trial-and-error needed to come up with viable alternative solutions.
My idea for a competent and flexible treatment center is ever-evolving. The more I learn about treatments that don’t work, the more I wish I had the knowledge, funding, and resources to provide options to others (and myself). I know I need to work on my own stuff before I can initiate such an under-taking, but I don’t have the funds to find and hire people I think could actually help me. Ideally, I would want a safe place to intensively work through all the crap in my head. I want that safe place to allow me to utilize my known positive coping skills, but also help me develop new ones. I want to have the option of talking about, communicating about, and sorting through everything that comes up when we open the topic of my traumas. I want to be able to do that daily, or even several times a day. I want to be able to take a break from it for a few days if it gets overwhelming, and not be deemed “stable enough” to be discharged. I want to be able to have someone gently guide me back to dealing with things after a break. I want to be able to face my triggers and work on coming through them safely on my own, but I also want to know there’s support there if I can’t accomplish that. I want access to music and my social network. I want access to my animals. I want to be able to get out into nature (on my own or with someone else, depending on the situation). I want to be allowed to cry, and learn that I can safely do that in front of another person. I want to have people challenge me to get through things without resorting to self harm, OD, suicide, or PRN medications, but I also want them to support me if I do slip up and cut or need to take something for anxiety. I want to have access to art therapy, music therapy, “alternative” therapies (basically anything that is not the western medical model), meditation, and holistic options. There are places out there that offer much of this, but don’t accept insurance or payment plans. That limits their treatment to the independently wealthy… and even then they limit what you can listen to, read, watch, or get support with… If you happen to disagree with a “core” part of their philosophy, you might as well not show. The place that looked best on paper had two major draw-backs: 1) it was self-pay only and very expensive ($16,000/wk and you are expected to stay a minimum of 4 weeks), and 2) you could only engage in recovery-oriented activities. No music outside of meditation chants, no reading if it wasn’t directly related to recovery and treatment, and no TV or movies. I’m a big proponent of diving head-on into your recovery, but every now and then your brain needs a break. Even if I end up triggered or craving, it helps in the long run. After all, I want to know how to handle those triggers once I leave the program. Totally cutting me off from anything that may or may not cause a bump in my road to recovery only serves to disadvantage me once I leave the padded safety of the treatment center… but it’s a moot point anyway, I could never afford the place…
So yeah, we need to seriously re-think mental health care in this country. Everyone is different. Everyone responds differently to treatments, so let’s start catering to individuals… I just wish I had the resources and the voice to start the process.