May Cause Side Effects–Radical Acceptance and Psychiatric Drug Withdrawal: An Interview with Brooke Siem

Brooke Siem is a writer, speaker, and advocate for the safe de-prescribing of psychiatric drugs. Her work on antidepressant withdrawal has appeared in The Washington Post, the New York Post, Psychology Today, and many more. She is also an award-winning chef and Food Network Chopped Champion.

In this interview, we talk about her experiences of withdrawal from a cocktail of psychiatric drugs and her debut memoir, May Cause Side Effects, published in 2022 which is one of the first books on antidepressant withdrawal to make it to the mass market.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

 

James Moore: Brooke, welcome. Thank you so much for joining me today for the Mad In America podcast. I’m thrilled to get the chance to talk with you.

Brooke Siem: Thank you for having me.

Moore: We’re here to talk about some of your experiences of the mental health system and polypharmacy, experiences which are beautifully captured in your book, May Cause Side Effects, published by Central Recovery Press in 2022.

Your memoir is fascinating because, at the very time that you were making the decision to reduce your psychiatric drug burden, you were also making major changes in your life. I’m sure we’ll come on to talk about some of those experiences but to get us underway, could you tell us a little bit about you and how it was that you first got involved with the mental health system?

Siem: This was in 2001 and the timing is important for context as the world was a little different then. I was 15 years old and my father had suddenly passed away. When I look back now, I don’t see someone who was going down a terrible path. I wasn’t suddenly into drugs or hanging out with the wrong crowd, my grades didn’t tank, but I was different than I was before. I was very stoic. I was a serious ballet dancer, so the mantra of ballet is to smile through pain, and so, my reaction was concerning to the adults around me.

I was taken to a child psychologist who was objectively terrible. After a few sessions, it was clearly a pretty bad match and I was not interested in cooperating because she broke my trust early on. She called my mother one day, I didn’t know this at the time and said, “I’m recommending a psychiatrist. Brooke doesn’t need a psychologist, she needs a psychiatrist. I’m diagnosing a depressive and anxiety disorder and recommending medication.” At the time I was 15, but I was still protected by HIPAA laws in the state, so my mom had no context and so she just did what she thought was the right thing and took me to this child psychiatrist.

At my first appointment, I was given a prescription for a psychiatric drug. I don’t remember which one. I think we started with Prozac and then moved on likely to Zoloft since those were the two that were approved for use in children and teens at the time. I had obvious physical reactions to both drugs and so, in the end, we ended up on a combination of Effexor XR and Wellbutrin XL, neither of which were approved for kids and teens at the time and still aren’t.

Moore: I was so sad to read about the impact that losing your father at such a young age had on you, and I couldn’t help but be frustrated that the response to your grief seemed to be the desire to medicate you and medicate you quickly. Looking back now, how do you feel about that?

Siem: That old adage of ‘if you know better you do better’ comes to mind. I think that is the case for my mom and me and we have lots of conversations about this. I hold no resentment towards her or the choices she made because I know that she was just doing the best she could too and she was also grieving. But what happened then and is still happening now is that there’s absolutely no time given for kids. We want them to experience so little struggle and for some reason, we think that if we don’t intervene in the struggle early, somehow it’s going to derail the rest of their life. But I think what we’re doing there is intervening and derailing the rest of their life because we’re not allowing them to learn and build resilience and feel what it feels like to be uncomfortable and understand that that’s going to ebb and flow and how do we get out of that. Everything is so reactive.

For me, that was the real impact. It’s affected everything from the obvious things such as the way I was able to build resilience and understand my own mental, emotional, and psychological strength, how I self-soothe, my curiosity, what I wanted to do in the world, my jobs, financial stability, and my relationships. Literally every single aspect of my life was deeply affected, but it was so insidious.

I always think of this metaphor of when you’re flying an airplane, if you get off by just one degree and if you give it enough time, you’re going to end up very far away from your destination. That’s what it felt like. It felt like such a small choice at the time, but it made such a huge impact.

Moore: You share in the book that you had suicidal thoughts quite a long time after starting on the drugs. I think it’s brave to share in such an open and honest way and I hope it’s okay to read a short quote from the book.

You say, “Nearly a decade and a half after making a decision that seemed so small, so obvious at the time to go on to antidepressants at 15 years old, I found myself staring at a patch of New York City sidewalk from 30 floors above contemplating the biggest choice of all.”

Did you feel that those thoughts were because of a particular diagnosis or did you feel it was because of the situation you found yourself in?

Siem: Neither honestly, I just coexisted with those thoughts. I was never frightened by them and it never occurred to me to call the suicide hotline. All these campaigns, I just felt like they were for somebody else, and somehow it didn’t resonate with me at all. I don’t entirely know why that is.

I think at the core of it, two things were true for me. One, I really did not want to be alive, so why would I reach out to help myself or ask for help because at the core I didn’t want to live. At the same time, my thought process was what could they do? How is talking to a stranger going to help with the fact that I am fundamentally broken?

That is where the narrative of mental health and the cultural meanings of these things and the whole it’s not your fault mantra snuck in. It completely removed my responsibility to help myself in any way, and it taught me that nothing was my fault. People don’t like to hear that, but at the end of the day, we are all at the center of the universe. It’s how we all view the world. I am the hero of my own story, so it stands to reason that I have some control. It doesn’t matter what the outside influence or the diagnosis is, you are still in control of your own life. But I abdicated that power very early on because that’s what was taught to me through others’ actions.

This suicidal ideation was as common to me as looking at a tree and saying, “Oh, that’s a tree”, and so I never felt alarmed by it. It just felt like who I was. I only started to feel that maybe there was something not quite right about this when I started to do the math on how long I had been feeling that way in conjunction with how many antidepressants I had been taking. At some point, the light bulb just went on and I thought, I shouldn’t be this depressed on this many antidepressants. Something was going on, and there was just a hint of curiosity there to say, “Okay, well, clearly something needs to change”. At the time though, I just thought I needed to switch to a different antidepressant.

Again, I had fully bought into the narrative that this was hard science and that it was as effective as Advil for headaches or insulin for diabetes. So I just thought that maybe I needed to change pharmaceuticals, not change who I was and my perspective.

Moore: It’s so difficult for people to be honest about having thoughts of hurting themselves because if you admit that to a professional, there’s a high likelihood of being involuntarily committed. I think your honesty in discussing that part of your experience is really helpful for others to understand.

Siem: I wasn’t seeing any traditional therapist and I wasn’t seeing a psychiatrist. I kind of intuitively knew to lie about it if I was asked, but my strategy was instead just to make jokes. It wasn’t that I was never expressing things, I just did it in a socially acceptable way, and that felt like letting a little bit of pressure out of the balloon as needed.

Moore: You describe in the book the many ways the drugs were affecting you, and at one point you calculate that you’re taking 42 pills a week. It’s just staggering numbers of pills. There are combinations of antidepressants, drugs for hyperthyroidism, and drugs for gastric issues which presumably are a consequence of taking the antidepressants in the first place. You talked there about getting to a point where you thought I’m taking all these things and I don’t really feel much better for it. Was that the trigger point for you to start to think about coming off?

Siem: Yes, that was the moment. I have a little habit of quantifying things that feel too big for me to cognitively understand. I’d come home from work at the bakery I owned and do some rudimentary math on all sorts of things. I had calculated the number of days I’d been alive and the number of days that had gone by since my father had died. I had taken a bunch of life expectancy tests online and averaged the results to find an approximate date of how long I was supposed to live. I had all these numbers, and I started looking at them and then I also calculated the number of pills I take and all these things. The scale of these numbers started to hit me, which kind of was the purpose of the exercise.

The thing that really stood out was that I had taken more capsules than the number of days I’d been alive, and in a significantly shorter period. Also, I was reaching this weird little milestone in my life. My father had been dead at that point for 15 years and I was 30, so I knew that I was about to go to the point of my life where I will have had more time without him than I ever did with him. That also means that because I was medicated pretty quickly after he died, I will have spent more than half of my life on these powerful psychiatric drugs than not.

Furthermore, the only frame of reference I had as an unmedicated person was as a 14-year-old kid, I was in my 30s and I was on the same cocktail of drugs. I didn’t wear the same clothes I wore in high school, so why in the hell was I still taking the same cocktail of drugs every morning? There was just something about that that just didn’t make any sense to me because I knew I wasn’t the same body. My brain wasn’t the same, so if the science was sound why hadn’t it adjusted over time? That was the question that put me on this path.

Moore: Then you go on to describe your foray into the wonderful world of withdrawal. I think you saw a psychiatrist who recommended that you stop your first antidepressant, Effexor, pretty much cold turkey. People who’ve had the luxury of knowing about withdrawal can take steps to reduce slowly. But you didn’t know about that so you went straight into this unknown territory. Around the same time, you were getting ready to be on a major cookery show in the U.S. and you were planning a year traveling around the world to work. Tell us what that time was like for you.

Siem: There was a confluence of things that happened all at once. I was living in New York City, I owned a bakery. I’m a chef by trade and I had sort of drunkenly applied to compete on the Food Network’s show Chopped. I didn’t hear anything back from them for months. Then one day about six months later, they wanted me to come along for a trial.
When they finally emailed me and said you’ve been chosen for the show, I was deep into Effexor withdrawal. It was a bad day and I thought this was not going to work. That was the least of my problems though, because I had also received this completely out-of-the-blue opportunity to travel around the world for a year and work.

I think if most people had received this opportunity, they may have been excited and grateful and wanted it. For me, there was no joy in this opportunity at all. I simply saw it as a binary in that I can either go through with the suicidal plans or I can go on this trip. I thought that my life can’t be the same after this trip, so that was the reason I did it. I didn’t really want it in the way that you would expect. It was more just like it’s this or that, so we’re going to go with the least severe opportunity right now and see what happens.

There were a lot of logistics to make this work, and so one of the issues that I ran into was not being able to take a suitcase of the six drugs I was on at the time around the world. Some of the places I was going to don’t allow you to bring any kind of psychiatric drug into the country. I wasn’t necessarily going to be able to get a reliable substitute in the middle of Cambodia, that’s a recipe for disaster.

I had about six months before I was supposed to leave, and so I did what I was supposed to do, the commercials say to go see your doctor. I went to a psychiatrist this time, not my GP. I saw her and she was unsupportive. She told me if I had any withdrawal symptoms, it would be maybe feeling like the flu for a few days. At that point, I was on the lowest dose of Effexor on the market, 37.5 milligrams. She was saying, “Well, I can’t prescribe you a lower dose”. There was no talk of a compounding pharmacy, the term hyperbolic tapering didn’t even exist in our language at that point.

She did prescribe Prozac, and said that take this instead, she was talking about half-lives and saying, “If you take the Prozac then it’ll help bridge the change”. I told her that I was trying to get off these drugs because I knew that I needed to discover my baseline. I still thought that I just needed to be on a different drug. But I said how are we going to know what I need to be on if I don’t spend some time without anything, because my only frame of reference is being a 14-year-old, some 15 years ago.

I thought why would you prescribe another psychiatric drug that I then have to get off of, this doesn’t make any sense to me. My father had been on Prozac for a short time before he died and he hated it. I thought to myself if there’s any sort of genetic component to how this drug is processed then that doesn’t bode well for me. I didn’t know what I was about to get into but I said screw that. I just stopped taking the Effexor and that’s when a book began, but I didn’t know it at the time.

Moore: That was one of the parts of your book that most affected me because I’ve been through a difficult withdrawal experience. If you go online and look at the descriptions of withdrawal, you’ll see a list of physical symptoms including nausea, head shocks, and flu-like symptoms. You read that list and it doesn’t actually look that bad, you think to yourself I can tolerate that.

However, when you go through the experience, that list of symptoms does not do the experience any justice. But you capture it beautifully in the book. What’s not talked about often is the effect of withdrawal on your thinking processes. The chaos that your mind is in, the random rage that comes out of nowhere, the sometimes deluded thoughts that you get. The questioning, am I mad? Is this really happening to me? Am I going to act on some of these strange thoughts I’m having? You did an incredible job of capturing the maelstrom going on in your mind when you’re going through those early stages of withdrawal.

Siem: Thank you for saying that. I wrote the book from that perspective intentionally because I was in severe withdrawal for about a year, and it took about another year to come out of it and feel steady in the world.

What I realized was how in the world is anyone going to understand this or even identify it if they can’t somehow get close to experiencing it? I was very intentional about that because it allows people who are going through it to be able to say, yes, I understand that’s me, but I’m not alone. I didn’t have that and so in some ways, this was the book I wish I had had when I was going through withdrawal. The more prescribers read it, the more family members or caregivers read it and can have some idea of what their loved one is going through, the better everyone is going to be able to navigate it. It’s written in a very intentional way to create that effect.

Moore: There’s a bit in the book that I enjoyed reading where it dawns on you for the first time that you’re free of the drugs after all those tough times. You are taking scuba diving lessons and you have to fill in a consent form which says, “Are you presently taking prescription medications? You say, “For the first time in my adult life I get to write no, in bold letters. I feel a twinge of something like pride swell within me. I did it not with much grace or any dignity, and I’m still a mess, but I did it.” Reading that bit of celebration made me smile.

Siem: Recently I was getting my brain scanned for some research kind of for fun. I don’t know if that’s fun for other people but I’m very interested in coming at this from both the research side and also the psycho-spiritual side because I think they’re deeply connected. So I have this cap on my head and it’s filled with all these 19 little nodule things and they’re putting all this goo in my hair and scratching my skin to make sure the electro-conductivity is right and they’re just asking me all these routine questions at the same time. One of them is are you on any prescription drugs? It was another moment of being able to say “No, I’m not.” It’s been seven years and the answer is still no.

Moore: I think it might give people a sense of the gravity of the experience that people still many years, sometimes decades afterwards still think with pride that they achieved getting off the drugs. There aren’t many situations in life that you can say that about.

A few months ago you were a guest panelist on one of Mad in America’s online discussions about psychiatric drug withdrawal, and you talked of using radical acceptance as a way to manage and cope in very difficult times. That’s also mentioned in the book, and I like that concept very much. I wondered if we could talk a little bit about it. What does radical acceptance mean for you?

Siem: I have to give Tara Brach credit for that phrase. She has a book called Radical Acceptance and I definitely borrowed it from her and have learned a lot of the concepts from her too. I think radical acceptance and radical self-awareness go hand in hand. It’s this idea that we have to fully accept what’s going on at any given moment, especially when it’s painful. It’s only when you can finally accept that and stop fighting it that I think you leave room for healing to begin. Also, it just gets a little easier to handle if you can almost make friends with the pain in a lot of ways. The trick for me is I find that somehow it’s never about the pain, and this applies to physical pain or emotional pain.

In the moment, at this point, I know I can always handle it and I’ve learned to dissociate a little bit from it in a way where I’m more of the observer as opposed to experiencing it. Even with physical pain, I find that I can almost get into a state where there’s this kind of wall between what I could call the soul or the spirit and the body experiencing the pain. If I get myself on the right side of that wall, then I still feel the pain but somehow it doesn’t feel quite the same way. It’s a very difficult thing to explain. I don’t think there are any words that will ever fully encompass it, but it allows for a little reprieve.

It’s never about the moment even though we think it is. It’s about the fear that it will never end, that is where real pain comes from. We have evidence, all of us in our own life that we have handled every single thing that has come at us. The fact that we are all here today on this planet, in this one moment, in the only moment that ever truly exists proves that we have handled literally everything that has come at us and literally every moment where we didn’t think we could get through it. It’s not about the moment, it’s about the fear of things never getting better.

If you can somehow dissociate from that, pull back and radically accept the moment you’re in all the pain, then let it do what it’s going to do, let it process however it’s going to process. That’s when we actually can start to let it go and let the pressure release a little bit and start to get the validation that nothing is forever. When you realize that nothing is forever, then things start to flow and the pressure of pain can release.

Moore: I can’t remember who it was that coined the phrase, ‘This too shall pass’, and it always sounds very glib, but if you hang on to the thought that I am not stuck like this, then you know that change is possible. Also, there’s something about trusting yourself. Trusting your body to know to find a way through those difficult times and trusting your mind to sort out the turbulence. If you can trust your body and not get bound up emotionally and add more energy into an already chaotic system, I think that can be helpful for some people.

Siem: Right. I think so much about that and for me, in withdrawal, it was about trying to put as much space between the withdrawal reaction and my reaction because those things got blurred. I mean, facing whatever it was, speaking it out loud whatever the thing was, somehow if I just brought it all up into my conscious awareness, it would sort of defuse the situation. If I was having really bad intrusive thoughts, if I could just put a moment in between and break it somehow, it would help.

For me, the intrusive thoughts were so scary because they were violent and made me feel like I was going to hurt someone or myself. But the second I started speaking it out loud or writing it down, it was kind of like showing the ghost itself in the mirror and it got scared and went away. Sometimes I felt like I was doing that pretty constantly, sometimes journaling for an hour or so to get it to calm down. But speaking it out loud defused it and I think that’s when the radical acceptance and the radical self-awareness had to come along. I just had to be very honest with myself and say that right now you can’t pretend that this isn’t happening, we need to talk about it, we need to face it. I had to find safe people to do that with or even just talk to my dog or a piece of paper.

Moore: The praise for your book has been off the scale and it is completely understandable why. I’m sure that having written this book, people reading it and are messaging you, left, right and centre asking for advice. How do you approach speaking to people about their experiences?

Siem: A lot of it depends on what they’re asking me. The first thing is that I don’t work one on one with people in any sort of therapeutic way or even really an advisory way. There are some fantastic individuals who do that. I sort of tried it and just realized this is not for me, this is not how I want to contribute to this cause. The thing for me is that I find that asking why and getting answers is the best route, at least for me, to healing.

If people come to me, I just try and provide as many resources as possible. If they ask questions about my personal story, I’m happy to answer. Then just to give them tools because, at the end of the day, it’s each individual that’s going to take themselves through the healing process so I can’t drag them there. But I can give as many tools as possible. I keep up as much as I can on the latest research and what’s going on, so I have the tools to give them.

Whenever people reach out to me, it’s somehow exactly the same and completely different every time. At the end of the day, everyone’s saying the same thing. They’re all having the same problem, but the way it manifests just absolutely blows my mind sometimes.
Recently I’ve been talking to the parent of a 17-year-old boy who was put on antidepressants. At some point during the pandemic, he started experiencing post-SSRI sexual dysfunction (PSSD). He’s 17, and so he went on a black market to get testosterone because he did a bunch of research and determined that that was part of his problem. He realizes that there’s a problem and he’s angry about it. None of the doctors can help him because they don’t know about the issue. He’s more educated than them on the subject at this point. But what do you do? He’s on the black market getting steroids to try and fix a problem caused by a psychiatrist when he was 14. That blows my mind that the internet allows for 17-year-olds to learn about all this and then try and fix their problem through black market hormones.

It’s just shocking the variety of stories I hear. But as long as they know that they’re not alone and that someone hears them, I find that goes a long way. There’s a balance between understanding what’s going on with you and also having the strength and the sense to then pull away from other people’s pain because if you go online on an internet forum, everyone there is basically talking from the worst day of their life. If you spend too much time there, you’re going to lose all sense of your own compass because it’s so dark there. If people are going to go to peer support groups, I think that they’re a lot better in person if possible. We have a set amount of time and we are talking in person or over Zoom and it’s not just going to doom scroll on a forum indefinitely.

Moore: Was there anything else that we should share with people listening?

Siem: Obviously, I would hope that as many people as possible go and buy or listen to the book because I think that the things people can take from it are just so different and important. Then from a more global level, I think it’s important for people to understand how much pain they’re experiencing and what they’re going through. Again, we’re all the center of our own stories, so it can very much feel like it’s only happening to us, and trying to find a lesson in it can be a very difficult undertaking when you’re in the middle of it.
I think if maybe you can focus a little bit on how by going through this experience you are helping so many people around you because you’re going to get spit out on the other side as someone who is wildly empathetic and who has a better understanding of themselves. That honed inner compass is going to help you navigate the world in a way that resonates with you and will therefore resonate with other people.

If you can just find some way to shift into this as the greatest learning experience you will ever have, even if it sucks and that somehow it’s your duty to bear this and start with radical acceptance and radical self-awareness. That’s when you can start asking the right questions. I think the more you can do that work, the faster this process will go because part of the reason why it is there is to get you to learn, move, and graduate. We have all been anointed with this gift in a way that no one wants, but there’s so much good that can come out of it if you can just buckle up and let the ride take you.

Moore: Brooke, thank you so much. Your book was powerfully affecting to read. I identified so much with the mental chaos that you described so well, the racing, intrusive thoughts, the sudden rush of emotions and urges that can’t be easily explained. Also the feeling of losing touch with yourself as a person, with experiences filtered through this pharmacological lens. I do urge listeners to go and get a copy and read it. I’m so pleased to see how you’ve transcended those experiences and the book is doing so much good for people. It was fascinating to get to talk about some of your journey, Brooke.

Siem: Thank you so much for having me and for all of your great work as well.

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MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.