Monica Cassani runs a very popular blog, www.beyondmeds.com, that details her experience of being diagnosed with bipolar disorder, treated with numerous medications and then her journey of coming off those medications while incorporating holistic tools to help her heal.
In her own words:
“I have seen the system from both sides – as a social worker and as a person whose life was severely ruptured by psychiatric drugs. I write critically about the system, as well as about holistic pathways of healing without medication. Beyond Meds documents and shares many natural methods of self-care for finding and sustaining health in body, mind and spirit.”
This is an interview with this amazing woman who has served as an inspiration to thousands of people who have been looking for alternatives to the mental health system as well as people looking for help who have been challenged while tapering off of medications.
Jon: Let’s start at the beginning. You were first prescribed a number of medications many years ago. What was happening?
Monica: Basically, I was in college, and I was in a lot of pain, and I was dabbling in recreational drugs, both blatantly non-therapeutic sorts of drugs as well as ones that opened up consciousness and could be perceived as therapeutic and helpful in a lot of contexts.
In retrospect, I always see that the impetus to do that was one of seeking and searching, and ultimately, a long time ago, well before I had any clarity, I thought it was a searching for God, even then. God, to me, at this point, just means consciousness, that is all. Anyway, I was young and in pain, and I didn’t know what I was doing. I cracked open the doors of perception.
For me, being that I did not have a developed ego or sense of self because of a traumatic childhood, after first experiencing unity as a blissful state, I basically fragmented into a million pieces that was then labeled psychotic and manic. Healing has, in part, been a process of integrating that early experience. The iatrogenic damage has made that an additionally difficult task. That tossed me into what I have since often referred to as a kundalini awakening, but it manifested as mania in the psychiatric narrative, and I got locked up, and that was the beginning of my being psychiatrized, because nobody knew how to handle the energy moving through.
Jon: At that point you were hospitalized and you were started on the process of being put on a lot of different medications. At the height of it, you were taking six different medications, is that right?
Monica: Yes, and I cycled through about 40 different ones. They called me bipolar.
Jon: And you took the meds for 20 years?
Monica: Yeah, although I had periods … I don’t know that I had periods where I was on nothing, but the first five or six years, I guess I was on low doses of stuff some of the time.
Jon: In that process of that 20 year time, did you feel like the medications were helpful, or did you always had a sense that “this isn’t really working that great, but I don’t really have any other options?”
Monica: Kind of both, because there were no options, and there were times when, because there were no other options, sure, I felt grateful. Especially once you start relying on them and you’re feeling horrible. I even say today, having mercy on yourself when there’s nothing else is a legitimate reason to use medication, as far as I’m concerned. It’s about doing it appropriately. It wasn’t appropriate in the larger picture for me, but certainly there were moments I was relieved that I had something, sure.
I was very conflicted. It never sat right with me that I was destroying my body, that I was gaining weight, that my period had ceased. God, no, it never sat right with me. But I also simply had no other means of taking care of myself. Given what I’ve had to come through to get off of them, I knew. Part of me must have known that that was going to be involved. We know. We know what our bodies have gone through, and our bodies know how to heal themselves.
Jon: You mentioned these really challenging effects. Can you say a little bit more about them?
Monica: I stopped being able to read. I was a voracious reader prior to drugs. I ceased sexual functioning, normal sexual functioning. I became pre-diabetic, I did not take particularly good care of my hygiene. I had methods of faking it when I had to. I worked respectable positions. I really don’t know how I pulled that off for so many years. There were ways that I was dead inside, and I couldn’t do things that now are just second nature.
Jon: Okay. Then, in 2004, you’ve said that this real shift happened where you decided to stop taking your medications. What brought you to that decision?
Monica: Yeah. I’d moved to North Carolina and I just couldn’t do it. I couldn’t keep doing it. The drugs were just disabling me to a point that was just … I just couldn’t keep living a life while being poisoned. It really got down to that.
Jon: You have created a website known as BeyondMeds.com, which details your experience of coming off of these medications, the post-discontinuation withdrawal effects, and working with a lot of different modalities to heal through this process. Can you tell us a little bit about that experience of starting that website?
Monica: My initial journal that was private, was called Bipolar Blast but I changed that. By the time I created Beyond Meds…I still had some marginal belief in whatever the heck bipolar is. That changed a whole lot as I developed my understanding while writing for Beyond Meds. I no longer use psychiatric diagnosis as a lens for any mental distress at all. It simply has ceased to make any sense at all. That said, I definitely have aspects to my being that are in common with others who get this label. The thing that never sat right with me is that I have never actually identified with most of the superficial aspects that everybody imagines about bipolar.
As someone who was working with people who were labeled with psychiatric conditions, I just didn’t really relate to almost any of it. The problem with psychiatry is that it’s a reductionistic system, not that it doesn’t actually observe some real phenomena on occasion. Like bipolar, in and of itself, right there, is ridiculous, because for me, it’s not. Bipolar suggests two poles. My poles feel like a circle. It’s holistic. It’s everything. It’s a pole in a globe of reality. Again, talk about reductionistic. Talk about two poles, when I feel like there’s millions.
Jon: Having worked with a lot of people with people given the label schizophrenia and bipolar; they are very small words for very wide varieties of experience. Like you said, it’s reductionist. We try and capture these wide experiences into just these particular words, and they just often don’t fit the diversity of experience.
Monica: When I was working with people with these labels, and assessing people who were also supposedly bipolar, I never actually related to anyone with the language I was supposed to use by psychiatry. It never made any sense to me. It just didn’t. It just never did.
Jon: If there’s someone out there who’s been diagnosed bipolar and they’re taking Lamictal or Depakote or Lithium, and they go, “These meds work for me. I feel some side effects, but it’s far preferable to those really confusing thoughts that happen. Why should I come off meds? Is that something I should even do?”
Monica: I would say, “No, not if you don’t have a burning desire to do it. Absolutely not.” I think you need to want to and be motivated, and think about what it is you need to support yourself. It’s not something people should just do willy-nilly, and we see a lot of people doing that hurting themselves.
Jon: How do they hurt themselves?
Monica: When they don’t have support, that’s all. I’m not suggesting it’s better to stay on it, there’s just no support. This is one of my underlying themes, until we have an infrastructure of care that supports alternatives, we can’t responsibly suggest to people to come off meds without support. I’m not suggesting it’s not a good idea to come off drugs. Of course it is. But it’s not if there aren’t appropriate supports. I was lucky enough to … It’s not that we have a lot of financial resources, we don’t. But we have enough to keep afloat. That’s a hell of a lot more than a lot of people have.
Jon: Okay. Talk to me about the experience of coming off meds. I know it was a very long one. What has that process been like for you?
Monica: It was a process of slowly becoming more and more disabled, physically, and in some ways, mentally, too, if you think of things like PTSD stuff. As I became more and more disabled, there was a clarity that kept growing that this was the way through. I don’t know where that came from. I just kept following it. It seems to me, well, that I was in touch with a core sense of life force. I was directed, even before I was conscious that I was following direction, that I was. It’s just become more and more of a conscious process, as I’ve gotten out there.
Jon: You said “disability.” How did things get tougher for you as you withdrew off the meds?
Monica: I just kept getting weaker and weaker and weaker physically. It was like chronic fatigue, fibromyalgia, very severe autonomic nervous system dysregulation. Everything is dysregulated, everything. Hypersensitivity started happening, where at the height of it, I was hypersensitive to everything. Light, touch, food, chemicals. Everything. It’s not like that so much anymore. Everything’s diminished, and some of them are pretty much gone, except sometimes when I’m really, really tired or something. It was just global dysfunction of every system in my body.
Jon: Okay. How long did you take to taper off of those meds?
Monica: Six years.
Jon: I think readers will really want to know why did you take that long?
Monica: I don’t know. I had no other … it got hellish. Going faster made the hell worse, but it got to a place where the hell was … the worst hell was so bad and for so long. I’d say for two to four years, it was indescribably hellish. Maybe more than that. We’re talking darkness and ugliness so extreme that very few people can even begin to imagine what it’s like, except people who’ve been through this. There’s a whole lot of other things that send people through hell zones, but still, in a general sense, it’s such a fringe, radical hell experience, it’s not even worth trying to put words to it, really.
Jon: So you took many years because going quickly would have made your experience even worse?
Monica: When I tried, it would just ratchet it up even worse.
Jon: There’s a lot of talk out there in the communities of people who are coming off of meds who feel that a slow process is really key. That’s a very different model from a lot of what we usually hear from the medical establishment, which is when tapering off, it often takes no more than, say, a month, and even within a couple weeks, off of a lot of meds.
Monica: Yeah, but most of those people don’t stay off drugs. Their withdrawal issues get marked as psychiatric issues, and they go right back on stuff. Some people do come off quickly and easily, but you don’t know who you’re going to be. Basically, once you’re in the hell zone, it’s kind of like you’re just trying to get through. It doesn’t matter what anybody says, you just do what you do to survive. That’s how long it took me to get off. I literally couldn’t choose to go off faster or slower at that point.
What I discovered about hell was that you can be in very, very low depths of hell. Levels of hell that most human beings can’t even conceive of. But once you get down there, you realize you can go even lower. Hell goes on for a very long way.
Jon: Is one rule of thumb generally that slower is usually better than quicker?
Monica: I think that’s wiser, because if you get yourself into a mess where you’ve challenged your nervous system, it needs to recover. Avoiding excessive challenge to the nervous system just makes sense. That doesn’t erase the fact that some people go off cold turkey and don’t seem to have problems. But I don’t believe they’re anywhere close to a significant percentage of people coming off drugs.
Jon: What helped you in that process? A lot of your website is about holistic ways of approaching withdrawal, and you detail a lot of different things. Yoga, trauma work, diet, herbs, shamanic work, dance. You look at a lot of different perspectives and modalities. What about those things are really helpful, have been helpful, for you?
Monica: It’s less about those things than it is about just following my guidance. Those things are what happened to help me. There’s just as many others that I haven’t used. I have a friend that does swordfighting. She was supposed to write a paper for me, a blog post, and hasn’t gotten around to it, but swordfighting for trauma relief. Another one of my friends wrote an article on knitting as a meditative practice.
I share the things that worked for me because that’s what my personal experience is, but what’s more important is that I went with a flow and a trust of what was appropriate at any given time. Instead of having one practice, I just went all over the place. I think that is appropriate for me, because as we earlier talked about, I am not bipolar. I have a million poles. Because of dysregulation in my autonomic nervous system, I was bouncing all over the place. Something that was appropriate yesterday is not appropriate today, and sometimes something’s appropriate for two weeks and then it stops.
Jon: You were part of a process of people looking for alternatives. There’s been this real change. I think a lot of people perceive the mental health system is really broken right now, and that we are trying to fit a lot of people into very narrow boxes, when folks are really looking for a lot of different supports. I was wondering what you thought about, in your perfect world, how could we change this system to help support people better?
Monica: I think again, what I’ve been talking about, first of all, we need an infrastructure of care that supports alternatives. We don’t have that right now. Even if people want to do something different, they don’t have the opportunity. They have no choice. There are times when it is a wise choice, given the horrible situation, to take drugs. If you want to take care of your children instead of being halfway out of your mind, you take drugs. Come on.
We need to deal with reality, and some people do not have a choice, if they want to meet the requirements of a
marginally mature adult in this society.
But yes, an infrastructure of care needs to be created specifically for those who’d want alternative choices. Right now, that doesn’t exist. Then, once the infrastructure is in place or begins to be in place, this will have to be something that happens over time, I would imagine, people need to be encouraged to just trust their own gut instincts. What are they ready for? What feels right?
The most foundational important thing has been to follow my gut, and that has brought me to diet, to yoga, to movement, to dance, to epsom salt baths, and researching. My particular trajectory has involved this constant research and sharing. That’s my trip. Most people aren’t going to have to do all that, so they have a completely different trajectory. We’re all just different, and when we follow our gut and our heart, we become who we are, and we blossom into our unique selves.
You can also find me at the Facebook group Herbs for Mental Health