After receiving two chronic illness diagnosis by the age of 24, it really was no surprise that host Jackie Zimmerman also started to experience depression. Unable to tackle both, Jackie chose to focus on her physical health, letting her mental health deteriorate quickly — and dangerously. In this episode, we discuss the mind-body connection and how when your body is sick, your mind can quickly follow.
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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 ‘Chronic Illness & Depression’ 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.
Gabe: Welcome to Not Crazy. I am here with my co-host, Jackie, who has physical health as well as mental health and lives with major depressive disorder.
Jackie: I never get to my intro because you always say weird shit like has physical health.
Gabe: You do has physical health.
Jackie: Doesn’t everybody have physical health?
Gabe: You would be surprised at the number of people that are unaware that you can have both physical health and mental health.
Jackie: But I feel like, physical health is not a thing you have, like it’s not. It’s like an umbrella term.
Gabe: Like mental health.
Jackie: Yeah, whatever.
Gabe: Isn’t it amazing that people think that he has mental health is a perfectly reasonable statement, but people have physical health is stupid and nonsense.
Jackie: Well, they’re both stupid and nonsense. They’re forgetting the adjective. He has great mental health, right? He has poor mental health. You have to add in the thing.
Gabe: We are going to learn more about Jackie today. Many people don’t know that I met Jackie because she was an advocate for a completely different patient space. I was an advocate in the mental illness, mental health space, and Jackie was an advocate in the multiple sclerosis and inflammatory bowel disease space. And we met at various conferences that were designed to help all patients come together and years and years and years later. Jackie and I are now co-hosting a mental health podcast. I didn’t really consider you as a co-host in the beginning because in my mind, you did not have mental health issues. It was very cool of you because you explained to me that you’re like, look, Gabe, it’s all connected. And I have lived with depression. I have major depressive disorder. I just don’t share it as much because the physical illnesses are so, I want to say demanding.
Jackie: They’re front of stage, right, like mental illness for me is sort of backstage, specifically in advocacy.
Gabe: So I have a list of questions that I want to ask you because we really shouldn’t separate this out. I understand why we have separated them out. You know, again, I’m a bipolar advocate. I don’t talk about the aging process, even though turning 40 has, you know, I’m going to have to get a colonoscopy eventually.
Jackie: Oh, one whole colonoscopy!
Gabe: Yeah. But I just I think it’s important to understand that that’s not going to be my advocacy focus because I have to stick to mental health. But they’re so entwined, especially for you, Jackie. So first off, she’s 34 years old today. I know it’s rude to say a woman’s age, but let’s age this. You were diagnosed with your first IBD and M.S. symptoms at what age?
Jackie: I was 21 when I was diagnosed with M.S.
Gabe: Let’s pretend for a moment that you don’t have major depressive disorder. You are perfectly mentally healthy in every single way. Do you think this would mess you up? Would this have caused a mental health crisis to be 21 years old and diagnosed with something as severe as this?
Jackie: My best guess for somebody who is not me, because I can only speak specifically on my experience, is that in terms of would have “messed them up”, I think everybody has a moment of contemplating their future. And what does this mean? And a lot of fear and trauma involved in all of that. I think that happens to anybody, anytime they receive any kind of massive diagnosis that is life altering. I think you start to question everything and if you’re not on top of it and you’re not good at coping, you don’t have good skills and a great support network. It’s very easy to see how that turns into some version of depression and/or anxiety.
Gabe: 21 years old is when MS reared its ugly head, put you in the hospital and terrified you and your family. Let’s talk about Jackie at 16. Did you have depression at 16?
Jackie: No, I was not diagnosed with depression at 16.
Gabe: But did you have it?
Jackie: I think I probably had a very mild just kind of a sad kid tone going on, right? I wouldn’t say that I was depressed in high school. I’m not a terribly peppy person now, but I was not probably as happy as I think maybe a lot of my peers were or at least appeared to be.
Gabe: Twenty years old, again before the MS and the IBD diagnosis. You’re just a perfectly normal 20 year old, you’re hanging around in college or you’re chillin’ in Michigan. You got the Kid Rock song in your head because it’s the Michigan anthem. Depression, suicidality, any of that in Jackie’s life at 20?
Jackie: I had started therapy by then, which was something that I chose to do on my own. So I think maybe I knew there was more to life that maybe I wasn’t feeling. That’s the best way I guess I can explain it. I don’t know if I would have called it depression then. Nobody I knew was talking about depression. Nobody was talking about it. Not my family. Not my friends. No one. So I just knew like there were things I wanted to talk about. I guess. I think the same sort of tone of maybe marginally depressed, but not clearly depressed, not suicidal at all. Just sort of trucking along in college, doing things. At 20, I had just gotten home from studying abroad. So my life was slightly more depressed because I was really missing studying abroad. But it was just your average, probably 20 year old.
Gabe: Then it hits you’re 21 years old, you get this massive diagnosis, this scary thing. Walk us through that.
Jackie: When I was diagnosed with MS, I didn’t know anybody. There was no one in my family. I didn’t have any friends. All that I knew was what I saw on TV, which was that this is like a super scary thing and that a lot of old people had it because the news and media is very terrible at actually telling facts about most things. So I was scared for sure. I didn’t know what it meant. The first question I asked my doctor after my diagnosis. The first question was, am I going to die? Because I just had no idea, literally no idea what it meant at that time. At that time my MS didn’t necessarily, like take over my life. I was in a flare. And most the time, most of the time in M.S., flares are temporary. They last anywhere from weeks to maybe a couple of months. And I would go and have I.V. infusions daily for five days. But then I would go home. And I also had home nurse on the other days that would come and do the I.V. infusion at home. So I wasn’t actually admitted at any time in the early years for MS.
Gabe: But it’s pretty serious care.
Jackie: Yes, it’s daily, it’s intense, it’s long I.V. infusions.
Gabe: How old were you when inflammatory bowel disease came a knockin’?
Gabe: So here you are, 24 years old. You get used to the multiple sclerosis, then IBD wants to party. Walk us through that.
Jackie: Rewinding inflammatory bowel disease is an umbrella term, and it includes a couple different types of diseases, the two majors are Crohn’s disease and ulcerative colitis. I have ulcerative colitis. That diagnosis shook me in a way that I did not see coming. Not only did I not see the diagnosis coming, but when you’re 21 and you get an MS diagnosis, you think this is the worst thing that could ever happen to me, even though my MS was, you know, not that bad and it wasn’t taking away from my daily life. It still is like this is the worst thing. Then you get what I lovingly refer to as a “butt disease.” You’re a girl, so you can’t talk about butts. You can’t talk about the physical pain because it’s located in your digestive tract, which we don’t talk about. And you can’t go see a doctor because it’s hella embarrassing. So you’re living with this pain and this discomfort. And at the time, forgive me, but I was shitting massive amounts of blood, which is not right. But who do you talk to about that? So I finally got through the process. I finally see a doctor. I get the diagnosis. And it is this huge weight of, well, now this is clearly the worst thing that could ever happen to me. It could not get any worse than this. And I think that was probably right when depression, as maybe I know it now, really started to kind of rear in because I was trying to project my life. What does my life look like with MS and really severe IBS five years from now, 10 years from now? And just none of it looked good. It all looked terrible.
Gabe: Our listeners really identify with mental illness and mental health issues, and they understand this idea of being all alone in the world and not having anybody to talk to because who understands this? And, you know, people just tell you to cheer up and do yoga and take a walk and buck up and pick yourself up from your bootstraps. I think they can really relate to the part of your story where you’re like, I’m a 24 year old woman. I can’t talk about my butt. You’re not even allowed to laugh at like sophomoric humor as a woman. We all know that you do. But, you know, fart jokes aren’t part of the female culture like they are in male culture. I imagine this was very lonely and very isolating. And I haven’t even discussed yet the part where you’re terrified that you have an illness that may or may not kill you.
Jackie: Yes, exactly as a woman, you can’t talk about this stuff and so much so after I got the diagnosis, I told no one, not my mom and dad, not my sister, not my friends. I told no one about this colitis diagnosis because I was mortified. Could you imagine people talking about my butt like, whoa, no way, literally cannot share this with anybody. So I isolated in that way where I didn’t share my grief about a second chronic illness diagnosis with anybody. And then I isolated in that, I didn’t know anybody. So I didn’t talk to friends. I didn’t seek out other patients to share experiences with at that time. And then you add on top of that, a lot of illnesses, I think are isolating, but when you have an illness that keeps you literally in the bathroom for hours every day, you are isolating in a somewhat unique way that a lot of other people can’t relate to. Like maybe, you know, when you’re severely depressed, you isolate in your bedroom. When you have an inflammatory bowel disease. You’re not choosing to be in the bathroom. You have to be there because you’ll shit yourself all day long, every day if you’re not. And most people don’t invite other people into the bathroom while they’re using it versus with depression, maybe your mom or your sibling or whoever is in the living room, you just may not be like interacting with them.
Gabe: Maybe somebody will come and give you a hug with depression or at least ask how you are, but probably nobody is going to knock on the door.
Jackie: And if they do, you’re not going to be like you, I could really use a hug right now, you want to come on in. It is a whole new level of isolation. I mean, when it was really bad, I slept in there. I ate in there. Wwhen it was really, really bad. I only left to maybe get food or something and come back where I just put my pillow and my blanket. I slept on the floor of my bathroom.
Gabe: I don’t think that we really need to spend a lot of time explaining how a mental health issue can crop up from everything that you’ve just described. My specific question, though, is do you think that you would have depression if this physical illness didn’t hit you?
Jackie: I think that I would have been prone to depression. I think I would have been somebody maybe who overlaps depression and sadness and grief, right where maybe there’s a trigger in my life that I’m feeling more grief than maybe I would be or feeling more sadness and I would dip into depression, but not nearly as deep as I have because of these life experiences. Additionally, scientifically, if you look at where the serotonin receptors are in your body, 92, 95 percent? In the 90s percentile is in your digestive tract. So when your digestive tract is broken, you’re losing nutrients, you’re losing absorption, you’re losing all these things. On top of that, your serotonin receptors are broken also. So I think a lot of people with inflammatory bowel disease do experience depression partially just because of the nature of the location of the disease.
Gabe: Feeling physically bad is going to make you feel mentally bad. Specifically, I want to talk about what you said is that you would have been prone to depression. I think this is a point that a lot of people don’t understand. Some people go to war and they see the horrors of war and they come back and they’re just fine. Other people go to war. They see the horrors of war and they come back and they have PTSD. That is a well understood thing that some people, even though they have experienced the exact same thing, will end up with post-traumatic stress disorder and other people will not. There’s a third group of people. Those are the people that would have ended up with post-traumatic stress disorder but because they never went to war, we’re not even talking about them. It is possible because nobody knows that your body failing you caused mental symptoms and now you’ve got multiple things to deal with. It then went on. Right? You didn’t just get a diagnosis and spent a lot of time on the toilet, now you’re fine now. Other stuff started happening. Now I don’t want to fall down a rabbit hole on the treatment for IBD or MS, et cetera. I want to talk about like a very specific point because this is one of my favorite things that you ever did. You wrote an article about how to have sex with a colostomy bag. I just thought that that was extraordinarily brave because you’re a young woman who is talking about sex. That makes it brave. You’re a young woman who is admitting that you have a colostomy bag and you’re a young woman who is admitting that somebody with a colostomy bag wants to have sex. All things that people have trouble wrapping their heads around. Can you talk about why it’s so important to talk about having sex with a colostomy bag?
Jackie: I do. I also just need to like drop in a little bit of an educational moment that I didn’t have a colostomy, I had an ileostomy. And the reason I bring that up is because there are different types of ostomies. So part of the reason why I started talking about my life with IBD, I was just blogging into the void. Right? It was more catharsis and people read it. I was like, my god, why do you guys like talking about my butt so much? But it was the no one else is talking about this. And at the time, truly, ten plus years ago, people really weren’t talking about this. This was an isolating disease. Physically, emotionally, but also in terms of knowledge. People were not talking about it. And I was because I was like, who gives a shit? This is relevant to me. I was talking to myself, basically. I was writing what I needed to be reading that didn’t exist at the time.
Gabe: So in a way, your patient advocacy started off as a way to collect your own thoughts and reassure yourself.
Jackie: It was a selfish effort to begin with. Yes, it was.
Gabe: Nothing wrong with that.
Jackie: It was 100 percent for me. And when other people are benefiting from it, that’s encouraging. Obviously, you want to keep doing it.
Gabe: And it’s bonus.
Jackie: It is for sure. And not to like toot my own horn, but I always say that I embarrass myself on the internet for the greater good. And the reason I bring it up is because I also later wrote an article, so I don’t have an ostomy anymore. The surgery is called a take down. I now have an internal pouch. You can Google it. It’s called the J pouch.
Gabe: Which I lovingly call a J bag.
Jackie: Which is incorrect. But whatever. A lot of people with J pouches have issues with continence because we don’t have large intestines anymore, we don’t have a rectum. So the muscles and organs that were developed to hold your poop inside don’t exist anymore. And your small intestine has to kind of learn how to do this. So continence can be an issue. I was newly dating somebody at the time and I was sleeping in his home and I shit his bed and I wrote an article about it because that’s what I do. That’s how I cope. And it got shared on a website. And there were a lot of people who saw this article, like a lot. And the overwhelming response to it was, thank you for talking about this. And that’s one of those moments where you share this like the deepest, darkest, most embarrassing, most shameful moment of your life. Not, not in my life. It was it was up there, top three, at least for sure. It’s like looking it in the face. And as Brene Brown calls it, the shame storm in just saying, like, I’m not going to let this one get me. You know, it’s taking it head on because that one could have turned into like a super dark, isolating depression where I stopped talking to that guy, ghosted him because it’s too embarrassing to face him. Didn’t tell anybody in my whole life because, woo, too embarrassing. Got depressed for ruining a relationship, for shitting somebody else’s bed, for isolating from my friends, like the storm that follows an incident like that. And I’m getting better in my life, my age and my advocacy of just saying like, I’m not going to let that happen anymore. I’m just going to tackle it.
Gabe: I think we can all agree that it’s not great to shit somebody else’s bed, right, figuratively or literally, but it’s something that happened. It’s something that happened to you. And by talking about it openly, you realize that it happened to other people and those people realize that it happened to other people and all the sudden you don’t feel so alone. We’ll be right back after these words.
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Gabe: We’re back discussing Jackie’s physical health problems and how they relate to her mental health. I have been extraordinarily lucky. I don’t really have any physical health problems. I don’t. The only physical health problem that I ever had was also related to my mental illness. I used to weigh five hundred and fifty pounds and I had gastric bypass to lose the weight. That’s the extent of my physical health issues. So at least I can walk around and say, hey, my body didn’t fail me. Just my brain. It’s just utterly fascinating to me that you have mental and physical health issues. How does that feel? How do you feel about that in terms of your brain?
Jackie: It’s sort of the ultimate betrayal, right? When you look at a chronic illness, it’s very easy to look at it like your body has betrayed you. It’s attacking itself, but at least you got your head on straight. Right. And then when that happens, because I’m a firm believer in the mind body connection. I’m glad that there is science coming out to support that this is a real thing now. There are therapists and doctors that are working together now. I support all of that. But when your body fails you. And then your brain follows suit and starts tanking, too. It feels like the ultimate betrayal of I am not in control of any of this. That was probably the lowest when my body was in really bad shape. I had a failed surgery. I had gained a bunch of weight because of the steroids I was on, which partially caused the surgery failure. Then when I woke up from the surgery, they told me I had to lose a bunch away in order to try the surgery again. I had been working for six months to get to the point of this surgery. It was like the culmination of all of the shit, literally and figuratively. And in that moment, it was like all the fight that you had left just deflated. And everything was like, we are done. My whole body and my brain tapped out. Just done. That was a really hard moment to come back from.
Gabe: One of the things that people in the mental health space constantly talk about is stigma. The stigma against people with mental illness, it comes up so much. And I used to believe, as did many of my peers, that the reason there was so much stigma against people with mental illness is because they hated us because we were crazy, that the reason that nobody cared about us was because we were mentally ill. We were nuts. We were crazy. We were whack jobs. And therefore, they didn’t have to. They didn’t care if we lived or died. Then I met you and you told me that, you know, people aren’t exactly enamored with people who have shitbags strapped to them. And people don’t want to talk about people’s butts and people don’t want to talk about shitting. And on one hand, you were like crass about it. But on the other hand, I was like, say more, say more about that. And that was a really big moment for me and also a really sad one. It was a big moment for me because I realized that everybody who iss sick feels stigmatized against and discriminated against and feels ignored and abandoned and left out. And I’m not playing the suffering Olympics and saying that, you know, but mentally ill people get it worse because we go to prison. I’m not trying to say that. I’m just saying that I really honestly thought that people that had physical ailments took limos to their hospital appointments. I didn’t think that they felt alone. I didn’t think that they felt isolated. I thought that you got all of the casseroles and all of the prayer circles and all of the hugs and all of the understanding. And people like me got none of it. And I was really happy to find out that my circle just got bigger, that there was more people that understood what I was going through. Just in a different way. And then I was really sad because I was like, wow, yeah. There’s just like nothing I can catch where people are going to care about me.
Jackie: Well, I will one up you on that of the terrible feelings that we try not to share with other people, but we’ll share with the Internet instead. So having a chronic illness other than when it is like doing terribly flaring very high is relatively invisible, as some would say. There were a lot of times when I was doing really, really poorly that I kind of just wished that people could see it. I kind of envied people like in wheelchairs at times, which feels shameful as fuck to say. But it was like at least nobody questions you. Nobody goes like. But is that really what’s happening right now? What do you say to that? You know, it’s wrong. But that invalidation of what you’re feeling and thinking. There have definitely been times that I have wished. I wish I could just show this to someone. But let’s talk about all the issues. Let’s not talk about all the issues that people with physical disabilities that you can see go through all the time. Right. That is a little bit of suffering Olympics. And I’m not here to say that one is stigmatized more than the other or it all sucks. But there is this moment. And when I started working with advocates and other condition areas that I realize like we all have our own shit to carry and some of us do it in a bag on our abdomen and some of us do it other ways. But we all have stigma. We all wish we had more funding, right? We all have all of the things. And there is a little bit of solidarity and just knowing that your community’s not the only one.
Gabe: One of the biggest things that I learned when I broadened my horizons, and I want to touch on this for a moment for all of our listeners, network with other patients. I’m not saying don’t go to a support group of people with mental health issues because, absolutely. That’s a great place to be. But there’s also in many cities, other support groups designed around chronic illnesses. And people in the mental health space believe that they’re not for them. I don’t think that’s true, because when I started hanging around other patients, patients in other areas, I realized how similar we all were. And I also realized that many people with physical health issues are ignoring their mental health. They’re straight up ignoring it. They’re thinking, oh, no, no, no, no, it’s just my body that’s failing me. But hey, at least I’m not crazy, which on one hand can be a form of stigma. But let’s think about what they’re internalizing there. They don’t want to be sick in one more way. And they’re not getting help for the grief, the isolation, the loneliness, the depression, the trauma, because they don’t believe that it applies to them. That’s not good. I think that we all have a lot to learn from each other. And for people listening, if you know people in your life who have serious physical illnesses. Open up a dialogue with them. Figure out what you have in common. And look, I’m not saying make somebody else’s suffering your inspiration. But understand that we have much more in common than we don’t.
Jackie: Piggybacking on that a little bit, too, you mentioned grief in one of the things that I found to be really important with having two chronic illnesses and then also essentially developing really severe depression and anxiety along the way. It’s okay to grieve the life that you thought you’d have. It’s OK to be really, really sad about stuff that you thought you would do or who you thought you would be. And then to admit that you’re not that person and you’re probably never gonna be that person. And that’s one of those things that I think also branches off into mental illness as well. It’s okay to be really sad about the life you don’t get to have and you have to deal with it. And that’s one of those things that I think all of us can relate to. Right. Once you have this massive life altering thing, whether it be a diagnosis or an event or something, you really need to take the time to have those feelings about a life that you don’t get to have.
Gabe: Jackie, aside from the questionable decision to co-host a podcast with a dude with bipolar disorder, how’s life now?
Jackie: I really can’t complain about life right now. I have a really good life.
Gabe: Before we wrap up, do you have any last thoughts?
Jackie: The last thing that I just want to touch on is if you have a physical illness in your life. If you’re somebody listening and you have a chronic illness or something physically that’s going wrong and you feel your mental health slipping. Just remember that there’s no shame in that. They are related. And when one goes poorly, the other one follows pretty easily afterwards and it’s OK to treat them both at the same time. It’s also OK to just admit you can only focus on one.
Gabe: I still can’t figure out what idiot decided that physical health and mental health were two separate things. I can’t wait for the day that we just call it health. Jackie, thanks for opening up. And to all of our listeners, thank you so much for being here. Remember after the credits, there is always an outtake. We hope that you check it out. It’s usually funny and it’s often us embarrassing ourselves. And please, wherever you download this podcast, i-Tunes Google Play, Stitcher, Pandora, open up the little rating systems. Give us as many stars as humanly possible and write why you like the show. It makes Jackie and I feel better, and it helps other people know that they can choose us. You can always share us on social media. You can always e-mail us to our friends and you can also email [email protected] and tell us what you want to hear about. We will see everybody next Monday.
Jackie: See ya.
Announcer: You’ve been listening to Not Crazy from Psych Central. For free mental health resources and online support groups, visit PsychCentral.com. Not Crazy’s official website is PsychCentral.com/NotCrazy. To work with Gabe, go to gabehoward.com. To work with Jackie, go to JackieZimmerman.co. Not Crazy travels well. Have Gabe and Jackie record an episode live at your next event. E-mail [email protected] for details.