Medication for your brain – whether you’re newly diagnosed or have been in treatment for years, you may have doubts if drugs are right for you. You’re not alone. Jackie and Gabe get real about reasons people want to quit psych meds and why our brains convince us to quit despite the benefits of taking medication. They discuss consequences you may not be aware of from just stopping your meds and why you should always involve your doctors, no matter what your decision, when it comes to medication.
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About The Not Crazy Podcast Hosts
Gabe Howard is an award-winning writer and speaker who lives with bipolar disorder. He is the author of the popular book, Mental Illness is an Asshole and other Observations, available from Amazon; signed copies are also available directly from Gabe Howard. To learn more, please visit his website, gabehoward.com.
Jackie Zimmerman has been in the patient advocacy game for over a decade and has established herself as an authority on chronic illness, patient-centric healthcare, and patient community building. She lives with multiple sclerosis, ulcerative colitis, and depression.
Computer Generated Transcript for “Stopping Psych Meds” Episode
Editor’s Note: Please be mindful that this transcript has been computer-generated and therefore may contain inaccuracies and grammar errors. Thank you.
Announcer: You’re listening to Not Crazy, a Psych Central podcast. And here are your hosts, Jackie Zimmerman and Gabe Howard.
Jackie: Hello and welcome to this week’s Not Crazy. I’m here with my co-host, Gabe, who lives with bipolar and is also about to go live with his family for eight days this holiday season.
Gabe: And I am here with Jackie Zimmermann, who is the queen of getting shit done. And lives with depression.
Jackie: Gabe, I cannot wait for you to get back from hanging out with your family. I feel like we’re gonna get some solid episode ideas.
Gabe: January is going to be a great month for Not Crazy because we have so much to cover and lived experience is part of that. Me hanging with my family. Me asking them questions about what I was like when I was really, really sick. So I think that 2020 is just going to be fantastic.
Jackie: And I am going to make a nice little lead into today’s episode, which is in the New Year people tend to make resolutions whether they are warranted or not. And I think sometimes those resolutions for a lot of people are health related and that could even mean maybe going off of medications.
Gabe: Jackie, as always, you couldn’t be more right. Health related resolutions are at the top and they revolve largely around diet and exercise, you know, weight loss, strength training. Everybody joins a gym, but mental health is getting in there, too. But there’s a dark side to this, right? Because some people believe that in order to be mentally healthy, they must not be on any medications. Now, we’re not going to argue whether or not this is right or wrong. We’re just gonna talk about all the reasons that people feel this way.
Jackie: And in this episode where specifically talking about my depression and all the fun things that I did wrong that hopefully you guys can learn from.
Gabe: Yeah. So it’s important to understand that your mileage may vary.
Jackie: I am the quintessential example here because I have tried to go off my depression meds on multiple occasions for good reasons, for dumb reasons, and I think that a lot of them are reasons other people can relate to. They’re relatively common.
Gabe: Jackie, this idea of people not wanting to take psychiatric medications is not a new concept. I think that everybody, myself included, has struggled with this idea of, wow, is it really my lot in life to take pills, especially when I was younger? You know, I was diagnosed at twenty five and you know, some people are diagnosed at 14, 16, 18, 20, and all the sudden they’re carrying around a pill minder just like grandma. I’m not trying to throw grandma under the bus. I’m just saying that a lot of our friends who are also 16, 18, 20, 25, 30, they’re not carrying around pill minders. I think that sometimes one of the reasons people want to stop taking psychiatric medications is simply because they don’t want to feel different. It has nothing to do with how the medication is reacting in their bodies. And it has everything to do with the psychological task of putting a pill in your mouth one, two, three times a day.
Jackie: I think you’re right. I’ve definitely had that in my life. Not so much with the psychiatric meds, but when I was really sick, I took a lot of meds. I took 15 pills a day. So once I finally got off of all those, the last thing I wanted to do was take more meds that I didn’t think that I needed. So I’ve definitely been in the position of how do I get off of all these? Because I don’t wanna. I don’t want to have to. Right. Kind of like a child. But like, I just don’t want to do this anymore. And I think that that can be a very common reason. I think that can also be a little bit of a dangerous reason, though, because I think when you’re in the I don’t want to mentality, you’re not necessarily thinking about what’s best for you. You’re just thinking short term of right now. I don’t want to be taking this. I don’t want to be different. This is frustrating. This is annoying. And I don’t want to do it anymore.
Gabe: Jackie, unlike me, you have had a shit ton of physical health problems, straight up physical health. Nothing to do with mental illness. Nothing to do with mental health. Your body broken. And you took medications for the physical health issues. Now, those worked a little different, right? Because from the day they prescribed you the medications, you knew that eventually you would come off of them. Am I correct here?
Jackie: You’re not correct there actually, had they worked for me, I would still be taking them, but they didn’t work, so I didn’t take them. That’s why I ended up having surgery.
Gabe: Ok, so let’s talk about that for a moment. You just said that had those medications worked for you, you would have taken them for life so that you did not have to have surgery. Now, were you thinking to yourself? I’m just going to randomly stop taking the physical health medications at some future point, even though the doctor doesn’t want me to, and even though it may not be healthy because after all, I don’t want to take physical medications? Or is this just something that you only did with the mental health meds?
Jackie: This is something I only did with the mental health meds, which I can say very honestly, the first time I tried was when I was first coming out of being really sick. And there was a little bit of, well, I don’t want to be on psych meds for the rest of my life because of stigma. 100 percent stigma all the way. Right? And there was this weird concept that I had that I don’t know where it came from, but like “they” will know and “they” is in air quotes of like, you know, it’ll be on my permanent medical record, whatever that means. Like if I ever want to join the military someday, they’re going to be like, well, you are on antidepressants. But spoiler alert, I’m never joining the military. And I don’t know where that came from. I don’t know where. I just assumed everybody, whoever hired me for a job or something. I don’t know. But I was just like, these are bad. Don’t want them on my record anymore. Whatever the record is, I don’t even know what the fuck that means, but I just didn’t want it.
Gabe: This is just interesting because you were kind of bummed when you couldn’t have been on those other medications for the rest of your life.
Jackie: 100 percent.
Gabe: Like, when they said, hey, these medications aren’t working. You’re no longer going to take them. You were like, oh, give me my meds back.
Jackie: Yeah, I was devastated that they weren’t working.
Gabe: But you felt completely different about the mental health medications, even though they were treating something in your body that wasn’t working properly. They gave you pills and did the pills work?
Jackie: I will say yes. Yes. I don’t think that they worked exceptionally well, but they were I think had I stuck to it. They would have worked better.
Gabe: That’s an interesting point, too, because you’re saying that if you had stuck to them, they would have worked better. Which I kind of think the subtext in that is that maybe you were fighting them from the very beginning.
Jackie: A hundred percent, yes.
Gabe: So the minute somebody said, hey, you have severe depression, this is not good for you. You are feeling suicidal, and we want Jackie to be more mentally healthy. And medication showed up and said, hey, this is the treatment for that. You were already trying to figure out how to get out of it.
Jackie: Yes. Yes. And I knew I knew there was something wrong. I knew that I was not thinking the way that I wanted to be thinking or feeling the way I wanted to be feeling. But I also knew again, there’s like and I’m not paranoid. It wasn’t like the they, you know, conspiracy theory, but it just was like psych meds are bad. And I don’t want to be on that. I don’t want anybody to know I’m on them. And I don’t want there to be a record of me needing these things, which
Gabe: You keep saying that, I didn’t want there to be a record. I didn’t want people to know. How would people know?
Jackie: I have no idea.
Gabe: I mean, Jackie, we have a podcast and we’re like buddies, like we’ve hung out, like I’ve known you for several years. We make it a point to, like, delve deep into our physical health, our mental health, our emotions, our psyche. Eventually we’re going to cry together. And I have no idea what any medications you have ever taken. In fact, I don’t even know what medication you take when you have a headache. And I’m like your friend and your business partner. Why do you think that strangers are just like, oh, hey, there’s Jackie. She’s on X.
Jackie: I want to clarify that I don’t think this now. I’m not worried about this now. But then, and again, I don’t know where it came from. I wasn’t paranoid. I wasn’t worried. Nobody told me. It’s not like in my household, my parents were like, hey, there’s a secret governmental record on every medication you’ve ever taken. People just peruse it for fun at times. Like, I don’t know where it came from. But there was this idea of “they” and I didn’t want “they” to know anymore, which is just bonkers. Now, I meant it was literally a crazy thought, and because of that I tried to get off of them as soon as I felt like it was an OK idea, which was 100 percent too soon.
Gabe: So let’s go back to the very first time that you stopped taking your medication. So here you are. You acknowledge you have a problem. You saw a doctor for it. You got medication for it. You took the medication. And by your own admission, you were feeling better, doing better. Things were improving. Now, I imagine that your thought process wasn’t I’m going to stop taking my medications and go back to the way that I felt before I started taking them. What was your thought process? What was going on in Jackie’s mind? What did you expect to happen?
Jackie: I don’t know. I mean, I probably expected to just be fine. Right. I think the status quo is fine. Not good. Not great. Not wonderful, but fine. I was still in the surgery sequence here when the first time I went off. So I still had a lot of physical health problems to deal with. And I guess I just thought I would just tackle them and be fine, even though the first time I tackled them I was not fine. Again, none of this makes sense. I did a bad job of taking care of my mental health when my physical health was being awful. This is a prime example of that, where I was like, I got this. It’s fine. There was no evidence that I had it. I did not have it at all. But I just was like, well, you got to pick one. I guess.
Gabe: Ok. So you stopped taking your mental health meds. What happened?
Jackie: I don’t think that there was even a moment of, oh, this is better. I think it just immediately started to decline. You know, if you are somebody who takes antidepressants, you know that it is a matter of days, usually without your meds before you kind of start to feel maybe like things aren’t going as well. At least, okay, that’s my experience. If I go about four days, I’m like, man, everything kind of sucks again. What’s going on with this? Oh, surprise, I didn’t take my meds. So almost immediately, things started to feel worse again. I was sadder. I was more depressed. I was isolating. I was losing hope again. I didn’t lose all hope, but I was starting to lose hope in the surgery sequence that I was in. It wasn’t feeling like it was a good idea anymore. All the things I felt the first time I started taking antidepressants just came whooshing right back relatively quickly.
Gabe: So now this has happened. Everything came whooshing back. What did you do?
Jackie: Well, you know, I did what every smart person would do, which was nothing. I was like, well, I got this right. All the evidence here tells me I got this. Again, no evidence supported that I had that whatsoever. So it took a while. But eventually I went back to one of the doctors who was willing to prescribe me medication at that time because I had a couple different ones who were like, hey, you should maybe think about this and got back on meds.
Gabe: But you’re stubborn. So you repeated this a few times.
Jackie: I did.
Gabe: We’ve covered the first time. And, while I think that there’s probably an interesting story in the second and third time. Let’s talk about the fourth time you tried this. Like, OK, the first time you tried it, there’s a little bit of an understanding there, right? You’re thinking to yourself, hey, I’m not sure this is for me. I’m not sure I need this. I want to see what happens if I’m not on them. Now, there are smarter ways to do this. I would advise everybody if you think that you don’t need your medications, and there’s nothing wrong with that, you should absolutely speak with your medical provider. Explain why. And even if they’re like, look, you’re wrong. If you want to try it, tell them I’m going to go off my medications and I want you to observe me and I want you to know that’s perfectly understandable for the first time.
Jackie: To your point, Gabe, also I need to make it very clear that I did this the wrong way. I took myself off cold turkey, like an idiot. I didn’t tell my medical professionals. They didn’t help me through it. I just was like, I’m done with these. I’m gonna say 100 percent. Don’t do that. Don’t do what I did. Don’t be me, because that was the wrong way to do it. Do what Gabe said. Don’t do what Jackie did.
Gabe: Yeah, we still got to a time number four.
Jackie: Right. Right.
Gabe: So, the first time you’re thinking to yourself, I don’t need this and everything will be fine if I stop it. And it wasn’t fine. So you started again. Now, the second time you think, oh, I don’t need this. Everything will be fine if I stop this. So you stopped it. Everything wasn’t fine. So you started again. So the third time you thought, hey, I don’t need this. Everything will be fine if I stop this. But it wasn’t. So you started again. So now the fourth time you’re like, hey, I don’t need this. And I’m being very sincere. I don’t want anybody to think that I’m picking on Jackie, even though I’m clearly picking on Jackie from a logical, from an intelligent, perspective. If you’ve heard of somebody else repeating the same thing over and over and over again and expecting the results to be completely different, what would you think of that person?
Jackie: It’s not a smart move. We’ll just say that, right? I mean, the repeating something over and over again, expecting a different result is the definition of insanity. Right. Whether that’s appropriate for the show or not, it 100 percent is. But you have to be able to see your own patterns. You have to look at something and go. This is a pattern and it is either a good one or a bad one. And the last time I decided to go off meds, I went off because I felt great. I had been great for years. I was slaying life. I was happy. I was fulfilled. I had friends. I was going out into the world. I was good. And I think I did what a lot of people do, which is I’m good, I don’t need this anymore. Not I don’t want it, not it’s not working, but I’m doing so well, there is no depression in sight. I do not need this in my life. Spoiler alert: I was doing so well because of the medication I was taking.
Gabe: Because treatment was working.
Gabe: One of the things that’s very difficult for people with mental illness is, it’s not so simple as to just go off the meds. Find out that it doesn’t work and then go back on the same meds because your body adjusts to the medication, then your body adjusts to being off the medication. You can’t just start taking the original set again and expect it to work. In some percentages, that may be OK, but in larger percentages, the medication that you were stable on is no longer the medication that you can be stable on, which means you effectively have to start over. And that’s like a really scary prospect because for many of us, it took us a while to find the right medication to begin with. I feel the need to just yell the word disclaimer if you are thinking about doing this. There is nothing wrong with that. But do it with your doctor.
Gabe: This is why you pay them. Have a frank conversation with your doctor and say, this is how I feel. This is what I’m worried about. These are my concerns.
Jackie: Hey, we’ve got sponsors, they’ve got messages. Take a minute to listen.
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Jackie: And we’re back discussing medication treatment for depression.
Gabe: There are two reasons that people want to stop taking medications. Two primary reasons. There’s one, people think that they’re not working and they don’t need them and they don’t want to take medications that have a long term side effect, short term side effects. They don’t want to risk their liver, their body for a medication that they don’t need. That one is extraordinarily understandable. I worry about that with my own medication and I love my meds. But as I age, I think, man, what is my liver going to feel like after 60 years of psychiatric medication treatment? So I understand that. Work with your doctor. Get the liver test to make sure you’re doing the right thing. It’s the second reason that I want to talk about and that’s that shame, that stigma that I am a better person if I can maintain this on my own. I hear that a lot. I don’t need medication. I can manage my depression on my own.
Jackie: Mm hmm.
Gabe: I hear that a lot.
Jackie: So I don’t know if I was that person, but I had similar thoughts like that person. I remember saying out loud in therapy multiple times when I was really, really depressed that I was frustrated that I couldn’t outsmart it, that I knew that it was coming. I knew how to handle it. I knew what I did in the past. But I still couldn’t outsmart it. I wanted to be able to outsmart depression. And I was mad that I couldn’t do it. Why did I think that I could do it by myself?
Gabe: Well, you know, that’s an interesting thing that you said there, because it sort of makes me smile a little bit because here’s what you said. You said that I wanted to outsmart depression. OK, let’s change depression, too. I want to outsmart the raccoon that’s digging in my garbage. I don’t like raccoons digging in my garbage. I imagine that nobody likes raccoons digging in their garbage. So one day a raccoon doctor tells me, hey, you can get anti-raccoons and put them on your garbage can and it will work and they won’t be able to get in your garbage can anymore. So I buy them. And every day I install the anti raccoons onto my garbage cans and it works perfectly. And I feel I outsmarted the raccoons. And I bet everybody listening is like, yeah, you locked down your lids, dude. That’s common sense. But then I say, no, no, I don’t want to use the lid locks on my garbage cans. I want to outsmart the raccoons on my own. So now I will do nothing. But with the power of my mind, I will convince the raccoons not to dig in my garbage. I think anybody hearing that is like, wow, dude, just put a brick on the lid and call it a day.
Jackie: Well, when you…
Gabe: No, no. Can’t use a brick. That that’s cheating. That’s cheating.
Jackie: Well, when you put it that way. Yes, of course. But tell me anytime in your life when your mental illness is acting up and we’ll say where things make sense and you’re making rational choices. It’s not a common thing for me. It’s not a common thing. And in that moment, I was like, I feel you come in depression. I got it. I’m ready. I’m going to outsmart this shit. And I didn’t. I had no chance. And that time I went back on meds. Shocker. Right. And that was the last time. And the reason why was because I had a conversation with my sister about this, because there was still a little bit of shame involved in them. And I don’t know why. And it is I feel shame that I felt shame. Right. Like I shouldn’t feel shame about it. But like, there’s still this level of I really didn’t want them. I didn’t want to need them. And my sister said to me, it’s not so much that it keeps you out of like the pit. Right. If we say depression has a level one through ten, it doesn’t keep you out of one all the time. Because I’m hanging out at like a five most of the time. She goes, what it does is it makes you better prepared to handle the shit that comes up that you can’t predict. So for me, when I’m on meds specifically for depression, when something bad happens in life that you don’t see coming that you can’t plan for, that can take me down to a one. Real quick. But with my meds, it takes me down to like a three or four. It gives me a better chance at handling it. I still have to go to therapy. I still have to practice self-care and all that jazz. But it doesn’t tank me the way that it would when I’m off meds, I don’t go level zero immediately. I have a shot at tackling it in a healthier way.
Gabe: And that’s the part that I hate most about the discussion surrounding medication. People believe that it’s the easy way out that all you have to do is take your meds. Be med compliant. And suddenly mental illness isn’t an issue anymore and nothing could be further from the truth. You still have to work your ass off. You still have to learn coping skills. And you have to relearn your body and you have to adjust to the world around you and you have to learn your triggers and on and on and on. We have an entire show because of how complicated mental illness and mental health issues are. We wouldn’t have a show at all if medication just fix that. If all you had to do was pop a pill every day and suddenly mental health issues and mental illness just went away completely. Yeah, well what our podcast be called nothing like for real. This would be a non-issue. You’ll notice there’s no pinkeye podcast because pinkeye is so easy to treat. It’s just annoying at this point. So I really, really hate it when people say I want to fight it on my own. Listen, if you’re taking the medication, there is still plenty to do, plenty to do. Like you said, the medication is like the shovel. Right. It just makes digging the hole easier.
Gabe: But yeah, digging a hole is really, really hard. And you should give yourself credit for having dug it. You don’t get extra bonus points for digging the hole with your bare hands. In fact, you kind of look dumb.
Jackie: If I didn’t take meds right now, would I be OK? Day to day, probably, probably. Theoretically, we’ll say. In theory, I’d be OK. Day to day, I could sustain my life, be productive, be marginally happy. Right. What would happen if something bad happened like a couple years ago when my father passed away? If I had not been taking meds at that time, that would have been.
Jackie: I can’t even think of a word for how bad it would have been. It would have just been absolutely life imploding. You know, there would have been nothing left from the wreckage. It just makes handling the shit slightly easier. And I don’t take it to sustain myself every day. I take it it’s almost like a preventative right. Like it’s to help me for things I don’t see coming. Right now, if we’re going on a scale of 10, 10 being happy, one being super depressed, if I didn’t take meds day to day, I’d probably live at like maybe a four or five. Just my baseline would be lower, which means my capacity for handling shit would be lower, which means my ability to deal with it would be lower and everything just goes downhill much faster.
Gabe: And it’s important to remind everybody that all of this is predicated on getting the correct information, getting the correct treatment, finding the combination that works for you. And it’s important to recognize that for some people, medication is not the answer when it comes to depression. It’s not for everybody. We’re just asking people to be open to the idea and the people who are on medications to do the right thing if they’re thinking about making a change or going off of their medication. I really, truly and honestly believe that when it comes to all medical treatment, telling the doctor that you’re going to do one thing and then doing something else is a bad idea. And that’s everything. That’s physical health, mental health. That’s just it’s just a bad idea. We are not doctors. We did not go to medical school. This isn’t a speech on why you should take your mental health meds. It’s a speech on why you should participate in your treatment with your doctor and not lie to them. And if you tell your doctor, you’re going to do it and then you just decide not to. You are not participating in your own care. And in fact, you’re derailing your care because your medical team thinks you’re doing it. So they’re making decisions based on a lie, which is not a good idea for us. It’s not a good idea.
Jackie: No. And I hope that the main takeaway from this show is not never go off meds because you’re just gonna go right back on because you can’t handle life without them. That’s my story. I’m going to own that one. That’s me. I have committed to never coming off meds again because I know my life is better with them. Period. End of story. But that doesn’t mean that’s everybody’s story. So if you walk away with anything, it’s just to talk to your doctor about it. Because the way I did it in the past was the wrong way. Could I have been more successful had I done it with the help of my medical team? Probably almost more certainly, yes. But I didn’t. And it went terribly and it was really, really bad. So if you’re considering this or even considering changing medication, this all kind of goes together that you need to have this conversation with your doctor, with your therapist, with anybody in your medical team that is helping make decisions to keep you healthy based on the actions you take that they have prescribed.
Gabe: I think the final thing that I want to throw out there, Jackie, of course, is that everybody’s journey is different. Everybody’s recovery story is different. And one of the things that we have to stop doing to each other is pill shaming in the same way that we don’t want to believe that pills are the answer to everything. We don’t want to believe that pills are a detriment to everyone. Everybody is an individual. And so often I see it all the time in mental health circles on the Internet. We’re all commenting on everybody else’s mental health care and not in an encouraging way. You know, we’re saying things like, I don’t need meds so neither do you. Well, if you just work harder, you’ll be fine. Well, you know, if you do yoga and do CBD oil, you’ll be better. And just on and on and on and on and on. And it’s not supportive. It’s not constructive. And you don’t know that person’s entire history because you read some stuff about them on social media and now you’re giving them pointed specific advice. It’s dangerous. And I want to say to all the people who are taking that advice, I just told you where that advice is coming from. It’s important to think for ourselves. It really, really is. I know that we’re going to get e-mails saying that we are in bed with Big Pharma. And I just want everybody to know if any pharmaceutical company wants to give us a whole bunch of money, we will accept it because these are our real views. Sorry, guys.
Jackie: If we were in bed with Big Pharma, we would make so much more money.
Gabe: So much more. Jackie, thank you so much for being so real and so honest in this episode because it’s hard to publicly admit that we stumbled. But I know for a fact that so many people believe that they are the only ones that have stumbled and fallen and made a mistake. And that’s just not true. We’ve all done it. And as much as Jackie and I want to believe that we’re never going to do it again, we’re so going to do it again, it’ll just be slightly different with a little different twist at the end, like two princesses and a talking snowman instead of one princess and talking dwarves. It’s the same movie, people. Thank you, everybody, for listening to this week’s episode of Not Crazy. Share us on social media. Use your words and review us on whatever podcast player you download our show on. Forward us to people and remember after the credits is an outtake. I know what didn’t make it into the show. You can only find out by sticking around. We’ll see everybody next week.
Jackie: Thank you. Bye.
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