Electroconvulsive therapy (ECT) has been shown to be an effective treatment for people with schizophrenia, especially those with treatment-resistant schizophrenia. However, it’s not often brought up as an option for treatment.
Host Rachel Star Withers, a diagnosed schizophrenic, and co-host Gabe Howard explore Rachel’s own past treatment with ECT, the intense side effect of memory loss, and why ECT is not being offered to more people with schizophrenia.
Today’s guest is “Ashley” who is currently undergoing electroconvulsive therapy and shares her journey of navigating ECT while being a mother.
“Ashley” has schizoaffective disorder, bipolar type. She had a series of acute ECT treatments 4 years ago and has been receiving maintenance treatments ever since.
Rachel Star Withers creates videos documenting her schizophrenia, ways to manage and let others like her know they are not alone and can still live an amazing life. She has written Lil Broken Star: Understanding Schizophrenia for Kids and a tool for schizophrenics, To See in the Dark: Hallucination and Delusion Journal. Fun Fact: She has wrestled alligators.
To learn more about Rachel, please visit her website, RachelStarLive.comm.
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 the author.
Gabe makes his home in the suburbs of Columbus, Ohio. He lives with his supportive wife, Kendall, and a Miniature Schnauzer dog that he never wanted, but now can’t imagine life without. To learn more about Gabe, please visit his website, gabehoward.com.
Producer’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 Inside Schizophrenia. Hosted by Rachel Star Withers, an advocate who lives openly with Schizophrenia. We’re talking to experts about all aspects of life with this condition. Welcome to the show!
Rachel Star Withers: Welcome to Inside Schizophrenia, a Healthline Media podcast. I’m your host, Rachel Star Withers here with my great co-host, Gabe Howard. Today’s topic is one of the most infamous treatments for schizophrenia. It’s regularly shown in entertainment as inhuman, terrifying and torture, something that will fry your brain and erase your memory. We’re talking about electroconvulsive therapy, ECT, formerly called electric shock.
Gabe Howard: Now, of course, Rachel, like all things portrayed in the movies, as we’ve talked about on this show pretty much since its inception, you should not get medical advice from movies. Is ECT an electroshock therapy, electroconvulsive, one of those things that is mis portrayed on in pop culture.
Rachel Star Withers: Absolutely. I always say this like nothing is ever as exciting as it is in the movies. When people always ask me, like, what was it like for you and I? And I tell them, they’re just like, Oh, I’m like, Yeah, I was asleep. They put me asleep. Then they woke me up. And they’re like, Did you jerk around? Well, for one, I was asleep. So I don’t know. But also, no, I didn’t. Just like everything related to schizophrenia, it has a lot of misconceptions about it.
Gabe Howard: The misconceptions aren’t just on how it is administered. It’s also on its impact, its effect, its side effects. It’s really just all-encompassing. And I’m excited we finally got around to doing this episode because it’s a question that I personally have witnessed Rachel get asked a lot whenever she brings it up. People are utterly fascinated with it, and I’m so glad, Rachel, that you’re willing to share this publicly because it gets really kind of a bad rap that it doesn’t deserve, but it still has side effects and it’s still important to understand what you’re getting into.
Rachel Star Withers: And it’s an effective treatment for people with schizophrenia, especially those with treatment resistant schizophrenia like myself. I’m very excited because today our guest is Ashley, who is currently undergoing electroconvulsive therapy. She’s going to share with us her experiences, the good and the bad. I’m so excited we have Ashley, by the way, Gabe, because she is only, I kid you not the second person I’ve ever met who that, as far as I know, has undergone ECT.
Gabe Howard: I think that’s amazing because it really is a very common treatment. Do you think the reason that Ashley is the first person that you’ve ever met is because she’s the first person you’ve ever met or she’s the first person who received ECT that’s been open enough about it to tell you that she received ECT?
Rachel Star Withers: Honestly, it’s a little bit of both. From doing this podcast, from getting to do conventions and travel around the world speaking, I’ve met a lot of people with schizophrenia and it has shocked me how many of them have questions about ECT. Wanting to know how did you get it? Do they still do it? So that’s why I say like I have met a lot of people who I know didn’t have it, but I can imagine there are quite a few who I’ve met who didn’t say anything because there is quite the stigma around having ECT.
Gabe Howard: And Rachel, we want to disclose to our audience that the stigma surrounding ECT is so pervasive that our guests real name is not Ashley. We wanted to ensure that she did not have any issues by being on the show. So we just went ahead and changed her name. Her story is completely honest. She is completely honest. But we just wanted to give her that little extra protection because Rachel and I have been on the receiving end of that stigma and we wanted to make sure that everything was okay. That’s how serious the stigma surrounding ECT can be.
Rachel Star Withers: Electroconvulsive therapy is something that I’m very passionate about. For me, if I had not had it 15 years ago, I can tell you that I would not be here. I definitely would have committed suicide. And that was one of the reasons that I was in such a bad place that pushed me to get electroconvulsive therapy. I see it as a lifesaver. And I do understand there’s lots of people, that have had bad experiences, especially in the beginning when ECT was first being developed. So yes, it has some bad stuff connected to it that is completely legitimate. For me and for a lot of others, though, it was a lifesaver and unfortunately, I think it is an underutilized treatment. There’s so many people who have committed suicide who never knew this was an option. And that’s always kind of been my goal is that I want people to know, look, if you haven’t tried this, there is one other option you should try.
Gabe Howard: All right, so let’s define our terms. What exactly is ECT?
Rachel Star Withers: ECT, electroconvulsive therapy is a treatment used for certain mental illnesses. What happens is electrical currents are sent through the brain to induce a seizure. And the seizure is actually the treatment. That’s the therapy. The electricity is just to induce the seizure. ECT is considered beneficial for people with schizophrenia who also have treatment-resistant schizophrenia, catatonia, suicidal ideation, severe symptoms, depression and mania. This isn’t just a fix all like, oh, well, why don’t we give ECT to everybody? No, it is seen as kind of the next level when other treatments have not worked is when you start to talk about ECT. After you’ve tried antipsychotics, after you’ve tried multiple things and you’re still not managing your schizophrenia.
Gabe Howard: It’s not the first treatment that you go to. It’s a treatment that you can use when those treatments have failed. It’s a it’s a higher level. Just to be very, very clear, I, I think that’s one of the things that pop culture does a very poor job of. Somebody is acting erratic. They go to a doctor or a therapist and they’re like, Oh, well, you have schizophrenia or you have psychosis, and the next thing you know, ECT. That’s not where we are. We really need to. If the movie were true, the ECT would come towards the end of the movie after we’ve eliminated many other trials, steps, therapies, etc. and then the finale would be the ECT. But the ECT always seems to happen at the beginning of the show.
Rachel Star Withers: Yes.
Gabe Howard: Rachel, I want to circle back to the definition of ECT. Your definition is medically accurate. It is correct and it sounds scary, right? Electricity hits the brain, a seizure happens and that makes you better. It sounds terrifying, but I never miss an opportunity to remind people that medicine, surgery, anything medical sounds terrifying. You know, my my father had a heart bypass. It completely saved his life. They literally drilled through his rib cage. Nothing is scarier than that. Obviously, when you need any medical intervention, it’s going to sound scary because it is scary and it’s okay to be scared. It’s just that ECT just has this extra oomph. It has this extra something attached to it that makes it seem more dangerous. But don’t give it any extra. That extra is manufactured in society’s mind. It’s not true.
Rachel Star Withers: If you’re wondering how in the world does a seizure help schizophrenia? Well, that’s still unclear. Like with most treatments for mental health, you hear the it’s thought to. They’re not really sure exactly how the seizure helps schizophrenia. The way it was described to me and I’ve seen it described on the Internet also this way is like it’s a hard reset. So if you like your computer’s messing up, you close the application, it’s still messing up. And finally you’re like, You know what? Fine. And you have to shut the whole program down and restart the whole computer. That’s usually what they describe as So again, kind of falling in that last resort area. Yes, it is extreme, but if you need to fully reset your computer, this is a way to go. ECT has actually been around since the 1930s and that is where we have a lot of the the scary portrayals of it because originally it was given to people, they didn’t get anesthesia, it was very painful. They were being shocked. The seizures, they would a lot of times have their bones broken. They try and hold the people down. They would strap them down. For many years, yes, this was I don’t want to say torturous, but it was for a lot of people. It still helped them. That’s why they kept doing it. But yes, it was very dangerous because it led to so many other problems. As time went on, we’ve learned how to make it safer and safer, just like any other medical intervention. Like Gabe was talking about. Surgeries. Yes, surgeries used to be done without anesthesia also.
Gabe Howard: Yeah. They had you bite on a bullet. That’s where that whole trope comes from.
Rachel Star Withers: Yes.
Gabe Howard: We don’t do that anymore.
Rachel Star Withers: Yeah. So now, if you have electroconvulsive therapy, you’re actually giving muscle relaxers so you don’t shake at all when you have it, they put it up to your brain. The seizure is like internal inside of you. You don’t shake at all and you’re sleeping through it. You also don’t remember any of it. You’re pretty much put to sleep. It’s outpatient, so it’s done within like a few hours. Then you go home.
Gabe Howard: Rachel, obviously when it’s described like that, which is in fact medically accurate, it’s just a mundane procedure, nothing to see here. So, you can see why it is portrayed as this other this other more dramatic thing. That’s a much better movie oomph. Right. But I’m still stuck on we have access to medical knowledge. Doctors have medical knowledge. Just are they not educating the patients? If this is what it looks like, which again, mundane description and it is effective, as we have discussed, and it is a treatment of last resort, which maybe not a complete last resort, but certainly a treatment that comes further down the line. I just all of these things seem to lend this idea that it would be utilized more often. Why isn’t it?
Rachel Star Withers: That eluded me for so long because I’ve had psychiatrists one a few years ago flat out tell me, Oh, they don’t do that anymore. And I’m like, Yes, they do. I had electroconvulsive therapy. And she’s like, No, they haven’t done that since the fifties. And I’m like, What? Yeah. Yes, they have. Like, I’ve had multiple ones tell me that, no, we don’t do that in the US or oh, I don’t think that’s a thing. And I’m like, I had it, it absolutely is. I’ve looked into it recently. In fact, both the American Medical Association and the National Institute of Mental Health support the use of ECT. However, electroconvulsive therapy is not a required subject in US medical schools, and it’s not a required skill in psychiatric residency training, which is crazy to me. Again, this is something that saved my life and the idea that it’s something that helps people with schizophrenia so much and doctors don’t have to learn about it. They can opt out of that one.
Gabe Howard: That’s incredible. That’s incredible.
Rachel Star Withers: To me, that’s a great disservice to people with schizophrenia, period. I feel like more doctors, counselors, therapists should be versed in this because it helps people with schizophrenia so much and it’s just not an option for a lot of people because they don’t know about it.
Gabe Howard: That is absolutely incredible to me, Rachel, because obviously we want our practitioners to know every single treatment that’s available for us. And this is definitely another gap in the schizophrenia treatment safety net that hopefully will eventually be filled in. But I want to make sure that we’re not going too far the other way. I want to make sure that we’re not selling this as a side effect free miracle cure that we’re all being deprived of that would completely cure schizophrenia tomorrow. There are side effects and there are risks. This is this is not a treatment that somebody should consider lightly. It’s just a treatment that somebody should consider. So let’s flip the script and talk about the risks and the side effects.
Rachel Star Withers: There are very real risks that do come with it. One of them is confusion, especially right after you’ve had the procedure. It usually goes away within a few hours, but it could last longer. And there’s just like disorientation. Another is stiffness. You know, you did just go through a seizure. And sometimes that can take a little bit for people to fully get their body moving exactly how it was before. As far as I know, I never had any of those issues. But it’s going to depend, you know, person to person, how you respond to it. Nausea, same thing. And that’s usually from the anesthesia. But the scariest side effect that is most well-known is memory impairments. Yes, ECT can cause memory loss. A lot of the times it comes back, but sometimes it doesn’t. Sometimes that memory loss can be permanent.
Gabe Howard: Rachel, is that scary for you, the idea that you’ve lost memories?
Rachel Star Withers: Well, I don’t remember them, Gabe. So no.
Gabe Howard: [Laughter]
Rachel Star Withers: That’s what people always ask me. But to be real, yes, I had a lot of memory loss for mine. I have complete chunks of my life gone where I can’t tell you. I’ve seen pictures like my brother’s graduation. And if you asked Rachel, were you at your brother’s high school graduation? No, I was not. And yet you can show me a picture of me at it, and I’ll be like, I don’t even recognize myself in the photo. It’s that weird
Gabe Howard: Wow.
Rachel Star Withers: That I don’t even recognize. I’m like, She kind of looks like me. Then I’m like, Wait a minute. That is, I have no recollection of any of that. So, there are some pretty major parts for me. I it’s hard to even say how much I lost, but I can’t remember my college experience at all. I had ECT right before my senior year of college, so I don’t remember that. I don’t remember the years after college. When I first was considering ECT, I spoke with a young woman and she was the other person I know who had gotten ECT. And she told me about her memory loss and she goes, Rachel, you have to write everything down. Passwords to things, write it all down in case you forget. And I took that a step further. I decided to make videos of it, and I ended up making a documentary called Watch If You Forget. And that was my collection of talking about the stuff I didn’t want to forget before I went through the ECT. And it’s funny because I can watch that now and I have no recollection of any of that stuff. It’s weird to even watch it, like hear myself talk. I’m like, What? Who is this girl? It looks like me. But yeah, I don’t remember making any of it. It’s on YouTube, by the way. Again, it was made a while ago.
Gabe Howard: It reminds me of the movie Memento.
Rachel Star Withers: Mm-hmm.
Gabe Howard: Now I know it’s an older movie and I’m sort of reaching back in the archives 20 years, but the general premise was that he had no memory, so he would tattoo information on his body so that he could keep up. Or if we need maybe a comedy to use as a reference, 50 First Dates,
Rachel Star Withers: Mm-hmm.
Gabe Howard: She could only remember a single day and then she’d forget when she slept. This is the thing that sort of conjures up in my my mind when you say memory loss, I still want to hit very hard on this idea that do the ends justify the means? Are you okay with this memory loss in exchange for stability with schizophrenia? Because anyone listening would be like, Look, I don’t. Schizophrenia already messes with my mind. I’m not going to let the treatment mess with my mind as well.
Rachel Star Withers: The memory loss amnesia doesn’t keep happening. So it isn’t exactly like Memento and 50 First Dates where it keeps on happening. It’s more of just like a chunk was just taken. And sometimes, like, pieces of that chunk will come back and I’ll be like, Oh, wow, a lot of that. Many times that happens with people where parts that they have forgotten will start to come back years later. So sometimes the memory loss isn’t completely permanent. Who knows? Next year, like all of mine, could come flooding back to me. I’d be like, I remember that high school graduation, but as of right now, it’s just a big old chunk of nothingness.
Gabe Howard: Do you think it’s worth it?
Rachel Star Withers: For me it was. ECT therapy has shown to be 70 to 90% successful in improving a patient. Now improving, not curing. This is not a cure. My schizophrenia did not go away. But it did improve things for me. It made it much easier for me to manage my schizophrenia. In a 2021 study of hospital records found that people with schizophrenia who received ECT treatment were less likely to be readmitted to the hospital within the next six months.
Gabe Howard: That’s an incredible success rate. And I’m really glad that you reminded our audience that there is no cure for schizophrenia. So what we’re looking to do is make tomorrow better than today. And this is a treatment that absolutely achieves this, albeit with risks and side effects. What was it like? You received ECT? What was the experience like for you?
Rachel Star Withers: It’s outpatient and you have to bring somebody with you because you cannot drive. And when you first do ECT, you usually have it a few times a week. For me, I had it, I think three times a week for two weeks. Then after that, you’ll usually have some maintenance treatments. It’s up to your doctors and it’s up to how you’re responding, how many maintenance treatments you might have. I had six treatments total, not that many. Honestly, maintenance treatments weren’t even offered to me at that time. But yeah, it really wasn’t that exciting of a thing. My mom would drive me back and I took off work for two weeks and she watched over me. She has only said great things about it. For her. She said, I came out of a very bad darkness and I was able to start managing my schizophrenia again.
Gabe Howard: And I think it’s always important to point out that you didn’t skate. Right? It’s not magical. You’ve had side effects, you’ve had issues, you’ve had bad days, you’ve had problems. You have memory loss, your mom watched you for two weeks. There’s all of these negative things that often don’t get discussed when we’re, you know, we’re just so desperate to show that recovery is possible, that sometimes we forget to remind our audience that you at one point were not recovered and had to make some really tough decisions. Before you had ECT for the first time, you obviously told your family I’m having ECT. What was their response to this?
Rachel Star Withers: To rewind back. So a doctor had told me about it. And this doctor, he was not a very good doctor, to be honest. He scared me and I was thinking, No, no, that’s too extreme. I’ll never do that. My schizophrenia continued to get worse, and within a year I was at a different one, basically begging for it. That doctor said, okay, we need to try a few more anti psychotics. I’d already been through quite a few and wasn’t responding to them, but they wanted to make sure there wasn’t an easier route. None of those antipsychotics worked either, and he was the one who put me through the ECT. My parents have always been very supportive. I think for them they probably were scared in the beginning, but they were there. They would go to the doctor with me. They were always part of this process. There was no like surprise. It was getting very, very bad. When I finally did decide to have the ECT, I can’t tell you how I graduated from college. Those areas are like completely blank for the memory loss. But I know from like my writings and different things, I was really, really struggling. Everything had like fallen apart. It was just bits and pieces.
Gabe Howard: Rachel, do you still get ECT? Is this like a medication where it’s a lifelong treatment?
Rachel Star Withers: It’s going to be up to the individual. In a little bit, we’re going to talk to Ashley, who’s had a much different experience than I have as far as ECT. With me no. However, a few years ago I tried to get ECT again and I was in the process of that. And then COVID happened. The facility that I went to, they shut down and I started with a new doctor. And this doctor at the time didn’t do ECT. So that kind of got pushed to the back burner and I went through some other treatments. And honestly, Gabe, it’s still on the back burner. It’s not something that I’ve said nope. We’re still, you know, managing my depression and schizophrenia. If it starts to get bad again, yes, I’m going to push the current doctors that I’m with about I want the ECT again.
Gabe Howard: Your experience aside, what is typical?
Rachel Star Withers: Everybody, when you get ECT, you’re going to have those usually a week to two weeks to three or four of kind of intense treatments like every other day or two or three a week. Then it’s kind of wait and see how the person does, see if they need maintenance treatments to follow up. In the maintenance treatments would just be like once a month, once every few weeks.
Gabe Howard: The bottom line is you need to work with your provider to find out what is appropriate for you and not assume that just because somebody else had this experience or needed this number, that you need that number or will have this experience. It is very individualized.
Rachel Star Withers: Just like taking antipsychotics. Every person with schizophrenia probably has a different dosage, different set of medication. Of the different people with schizophrenia that, you know, Gabe and I know together, I can guarantee you we all take different medications.
Rachel Star Withers: And we’re back talking about electroconvulsive therapy and its use in the treatment of schizophrenia. When I was doing research for this episode and I was trying to think who would I want as a guest? At first I was going through medical articles. I was trying to find different doctors who are on like the forefront of this ones who are like still, you know, researching electroconvulsive therapy and schizophrenia. And, I don’t know, I just decided, wait a second, I know someone who is having this. Many years ago, that’s the main thing that helped me make the decision was a young woman who decided to be open with me and she had ECT. And she says, Look, Rachel, this is what it’s like. But for me, it really helped. And it sounds like you’re like I am and you should really try it. And for me, just having someone who’d done it before. That’s what helped me. And that is why I reached out to Ashley, because I was like, Let’s hear from someone else’s perspective also. What is it like? And I’m so glad I did because, yes, her journey is completely different than mine.
Gabe Howard: That sounds great. Rachel. I’m excited to listen to this interview. Let’s go ahead and play it right now.
Rachel Star Withers: Today we’re speaking with Ashley, who is currently undergoing electroconvulsive therapy. First off, Ashley, thank you so much for being willing to talk to us about this journey, because I know it’s an intense thing to talk about.
“Ashley”: Yeah, no problem.
Rachel Star Withers: You sound very easygoing, though, with it.
“Ashley”: I’ve had it for quite a while now, so [Laughter].
Rachel Star Withers: Start us off back at the beginning. What led you to get electroconvulsive therapy?
“Ashley”: I have schizoaffective, I have bipolar type. So, I have the schizophrenia symptoms, plus bipolar symptoms. And my depression with the bipolar side of it was kind of, I guess, not really being treated well. And I was basically was treatment resistant. They offered to try ECT. And I agreed. And since I’ve been receiving treatment, it’s been pretty helpful as far as treating my depression. And actually part of my paranoia with symptoms has actually kind of improved too.
Rachel Star Withers: Now, when you say you are treatment resistant, what were some of the other treatments that you’ve already been through?
“Ashley”: Umm, mainly just medication. Like, I don’t even know how many forms of antidepressants, along with other medications. I just couldn’t find a medication that was really working. I get psychotherapy, too, and that helps. But it just didn’t take care of all of it.
Rachel Star Withers: So, what is the process like to get ECT, to actually go and get the procedure?
“Ashley”: There’s the acute side of it and then there’s maintenance. When I first started receiving ECT, they put me through an acute series. I got treatment three times a week, Monday, Wednesday, Friday for two weeks. Once I finished that part of treatment, they pushed me over to maintenance. Right now, I receive it every two weeks. Basically, when I get to the hospital, I get there about 20, 30 minutes before my scheduled treatment time, just so they can throw an IV in me. I have to do a PHQ-9, which is a depression screen. I do that before every treatment just so they can kind of track how I’m doing. And they go over my medications. I talked to the doctor for 5 to 10 minutes. Then the anesthesia team is hooking me up to a heart monitor, oxygen monitor. And then they’re also hooking the actual leads up to my head. I get the bitemporal, so I have electrodes on both sides of my head. So once they get me all hooked up and I’m done talking to the the physician, anesthesia then they go ahead and throw the medications in. The very first time I had ECT, they did not give me anything for headache or nausea. And I had really bad headache and nausea after that first treatment. So now they give me medication through my IV for that they give me a medicine to fall asleep, which kind of stings. And then they give me another medicine that actually paralyzes your muscles. The procedure only lasts like a minute or two and you’re asleep through the whole thing. And once they’re done, they wheel you into recovery with the nurses. And you’re usually there for 45 minutes to an hour kind of trying to wake up. When you’re ready to go home, they’ll roll you down to whoever came with you to drive you home.
Rachel Star Withers: Now, I know the question that everybody wants to know is, what is it like? What is it like to get ECT?
“Ashley”: Actually, you know, I don’t mind them putting me to sleep. It’s kind of weird to say. It’s kind of a weird feeling, as I’m kind of drifting away, I always kind of give them, like, a peace out sign or see you later. I’m usually awake after like the 45-minute mark. I’m tired, obviously, like, I don’t remember a lot of. I seem to remember it a little bit better now than when I did what I did when I first started getting it. My mom is the one who usually takes me. On the way home will usually stop and get breakfast. And then I come home and I’ll take like a 1-to-2-hour nap and wake up feeling okay. On day of treatment, you can’t drive, so I can’t go anywhere. But, I’ve noticed that if I feel good enough to work out or go on a walk afterwards, the rest of my day is like so much easier.
Rachel Star Withers: What side effects have you noticed?
“Ashley”: Definitely in my memory. That’s the worst of it for me. I have a daughter and there’s a lot that I don’t remember from when she was little. And so that is kind of a bummer for me. My husband has to remind me a lot of things that big events that have happened in the past.
Rachel Star Withers: And how far back are we talking? So how far back are we, is this memory kind of disappearing?
“Ashley”: I’ve been getting treatment now for four years, so and she, she is going to be four in March. I do remember bits and parts but, but there’s a lot that I unfortunately that I don’t remember and that’s the hardest part really for me.
Rachel Star Withers: Do you think that ECT is working?
“Ashley”: I do. I think it is. I I’m getting treatment in a couple of days on Thursday. And, you know, I can tell over the last several days that I’ve been feeling my depression kind of kicking in a little more. I’ve been feeling a little more down. So I’m definitely ready to be getting treatment this week. I think it has helped me stay out of the hospital. Before I was getting gosh, I was in the hospital not just for my depression, but for my other symptoms. Maybe a couple times within a year, I would go in to the hospital for safety reasons. And since I’ve been getting treatment, I’ve really stayed out of the hospital, which is
Rachel Star Withers: Wow.
“Ashley”: A great thing to have happen. It sucks being in the hospital.
Rachel Star Withers: Now you’re pretty calm and collected talking about it now. But were you always like this? Were you scared at all before you started? Did you have any fear about what might happen?
“Ashley”: Yes, I did. I mean, when I was feeling probably at my worst, my doctors were like, ECT is really the next step. You’re in and out of the hospital. Medicines really aren’t helping. It took me probably six months to actually agree to start treatment. But once I did, I really turned a corner and now when I go in for treatment, it’s just kind of routine. It doesn’t seem to be a big deal for me anymore.
Rachel Star Withers: What made you decide to get it? Was there anything specific that happened or you’re just I’m ready to try something new?
“Ashley”: Yeah, I was just feeling so bad. I mean, I had just had my daughter, you know, and maybe that was why I was having a little postpartum symptoms, but I was just I was feeling so bad and I couldn’t take care of my daughter, I couldn’t really take care of myself. It was my last ditch effort I feel like. I decided I just need to do something different. I don’t want to hurt myself. I don’t want to hurt anyone else. And and I was afraid I was going to I really was afraid I was going to do something to myself. That’s kind of what made me make the decision to try it. And I’m glad I did.
Rachel Star Withers: And I just want to mention that you’re very brave for taking that step. Thank you so much for sharing it, because a lot of people, like me included, were terrified to get this done in the beginning. You’re helping a lot of people out there who are probably on the fence. What would you say to those people who are looking at maybe getting treatment but are afraid or just don’t know what to think about it?
“Ashley”: I think it does take a lot, you know, I guess I should add to that I work in health care and so, you know, the whole kind of medical aspect of it from start to finish I was familiar with. That kind of helped me with like my nerves. If things aren’t working with treatment and with psychotherapy. And when you’re at that kind of breaking point. There’s not a lot of side effects I’ve really only experienced besides the memory issue, positive things from it. And if things just aren’t working out and you’re not feeling good for for a period of time and. And you have support, I think it’s a good option.
Rachel Star Withers: Before you actually decided to get ECT, what was your impression of it?
“Ashley”: Like I said, I work in the medical field, actually work in neurology. I knew quite a bit about seizures, about epilepsy, about people having seizures. I had a good idea about what it was actually really about. But aside from that, aside from all of the knowledge that I have, yeah, I was I was kind of freaked out about it. I waited for a while before agreeing to it. For a couple of reason. One being the memory kind of part of it. That concerned me a little. The driving part of it, for the two weeks that I was getting the acute series, you can’t drive that entire time. And so that’s kind of annoying. It was kind of a little bit freaked out about it. But everybody, you know, all my doctors and stuff, you know, sounded pretty confident that it would be helpful. By the time that I was agreeing to it, I was pretty ready to try something new just because I was feeling so crappy.
Rachel Star Withers: How many treatments have you actually had?
“Ashley”: Oh, my. That’s, that’s a good question.
Rachel Star Withers: Like a ballpark?
“Ashley”: Oh, boy. So four years of it, I have probably had over 100. Yeah.
Rachel Star Withers: Wow.
“Ashley”: Yeah. Quite a bit.
Rachel Star Withers: Okay, you have my six beat. Wow. That’s a lot. Wow. Ashley, are you concerned about any long term side effects?
“Ashley”: The only thing is my memory. It’s not just my memory on days of treatment, it’s memory on a day to day basis. I. When I’m with my daughter, I really try to absorb and take in my time with her. I have a lot of things that I don’t remember about being with her and her parts of her life stage and that my husband has to remind me of. And if I could have a video of everything all my time with her, that’d be great that I could look back on. But I don’t. So that’s one thing I am giving up. But I think that. My memory. Maybe not remembering everything is a. A fairly small thing for me, being present for her and for my family in a good way. Me not feeling bad all the time.
Rachel Star Withers: Mm hmm.
“Ashley”: Me not wanting to hurt myself. Me being in a safe place. Making sure that I feel good so I can feel good for everybody else. And be a good mom and be a good wife and be good to myself. And I think that’s more important in the long run.
Rachel Star Withers: Have you gotten any stigma about going under ECT? Have you told anyone outside of, let’s say, your your mother and husband?
“Ashley”: Um, no, I’ve only I actually haven’t really gotten any stigma from it. I, I post some things on Instagram about getting treatment. And I’ve only ever received positive kind of positive vibes. People that, you know, have come up to me. You know, after friends or after reading my posts or something. And I’ve had some people come up to me and saying that it’s a brave thing to do. And I’m sure it wasn’t an easy decision, but I haven’t gotten any any bad stigma about it. I think that with any illness you do you got to do to to be well and whatever that may be, I would I would do it.
Rachel Star Withers: That’s awesome. Thank you so much for sharing a piece of your journey with us today. Believe me when I say like, I think you’re so amazing for doing this.
Rachel Star Withers: One of the biggest things when you’re considering to get ECT, all you really see is like kind of medical stuff on it or horror movies.
Rachel Star Withers: And there’s not, there just aren’t many people talking about it in a positive light and really say, look, this is an option.
“Ashley”: Mm-hmm, yeah, you’re right. I mean, like, I’ve seen plenty of movies where they have, like, ECT and, you know, and they. They put the stickers or whatever on their head, something in their mouth, so they don’t clench on their teeth, and then they convulse
Rachel Star Withers: Mm hmm.
“Ashley”: Everywhere. That’s just so fake. Like, it’s not at all what it is. It’s a controlled environment. The doctors, they go to extra schooling to take care of you and to give you the best treatment options. It’s a safe environment. You know, they wouldn’t continue to have so much research and offerings if it wasn’t effective for people. And I’m younger than a lot of the folks that I see that go in for treatment before me. But there’s people of all ages. I just think it’s a good option, if you need it.
Rachel Star Withers: Well, thank you so much for joining us today, Ashley, and sharing your journey with us and our listeners today.
“Ashley”: Yeah, of course. Thank you so much for having me.
Gabe Howard: Well, Rachel, good job as always. What was the most interesting part for you? What was it like for you to hear another person’s experience with the exact same treatment you received?
Rachel Star Withers: Even though I knew she was currently undergoing treatment and had been for a while, I did not realize how many times she had. I mean over 100. That is amazing and scary. And you talk about someone who keeps going back and getting this done so often. And to me, that’s the most amazing thing because I don’t think myself included clearly, but I don’t think I’ve ever met another person with schizophrenia who is this determined to make it. The things she’s going through for herself and for her family is absolutely amazing to me. And I think that takes so much courage to repeatedly go through that and to the fact now, you know, she’s so cool and calm when she’s talking like she acts like it’s nothing, even though she gets into telling us some very serious side effects that she’s had to go through, especially being a young mother, parts of missing her child grow up. But she’s willing to, you know, take those risks on to be there for her.
Gabe Howard: So that she can have a better life. It’s a risk reward and it’s going to be different for everybody. But there’s bravery there. You and I talk a lot on this show about how schizophrenia is sometimes a pro and con list. In order to get this, you have to give up that and it’s unfair. Schizophrenia is unfair. When she was talking and she’s like, look, I’ve got to give up some of these things so that I can be stable and present and in my child’s life there’s a there’s this part of me that just like breaks a little bit. Like that’s just such an unfair decision to have to make. And the way that she handled it, the way that she discusses it, it is inspirational, but it’s also unfair. I just want to remind our listeners that, you know, people with schizophrenia are doing the best they can. They’re making decisions like, do you want to remember your child’s childhood or do you want to be present in their adulthood? Do you want to be stable or do you want to have memories? And sometimes you question why people are making decisions. And these are the decisions that people with schizophrenia are routinely faced with. And I believe that she articulated that very well, and that really touched me.
Rachel Star Withers: It absolutely touched me too. I don’t cry a lot, Gabe, but I think at some parts I was like my eyes were getting a little bit moist. Could be my allergies, but I think it was her, her story. Because even though I’ve known her now for a little bit, I didn’t realize how much she has chosen to go through. And I think that’s the most important part, is that she is repeatedly making this choice and fighting to stay here on earth. Whether you have schizophrenia or not, if you’ve ever struggled with suicidal thoughts, that’s incredible for me to see her fighting against this stuff, for her family and for herself. I thank Ashley so much for coming and doing this for our show.
Gabe Howard: Yes. Thank you, Ashley.
Rachel Star Withers: Electroconvulsive therapy is not a cure for schizophrenia, and it’s typically used in combination with other treatments. Due to the side effects, it is seen as a last resort, but it is an option. It’s one that I hope people who feel like they’ve tried everything will look into. Thank you so much for listening to this episode of Inside Schizophrenia. Please like share, subscribe and rate our podcast and we’ll see you next time here on Inside Schizophrenia, a Healthline Media Podcast.
Announcer: You’ve been listening to Inside Schizophrenia, a podcast from Psych Central and Healthline Media. Previous episodes can be found at psychcentral.com/is or on your favorite podcast player. Your host, Rachel Star Withers, can be found online at RachelStarLive.com. Co-host Gabe Howard can be found online at gabehoward.com. Thank you and we’ll see you next time.