From Anosognosia to Acceptance with Guest Rachel Johnston

According to the National Alliance on Mental Illness (NAMI), Anosognosia is when someone is unaware of their own mental health condition or they can't perceive their condition accurately. Rachel Johnston joins the Mental Health Mamas this week to share her journey from Anosognosia to acceptance of Bipolar disorder, what helped her along the way, and how we might best support a loved one struggling with Anosognosia.

Notes and Mentions

Episode mentions: I'm Not Sick I Don?t Need Help! by Xavier Amador

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Tina: Hey everyone, I'm Tina

Serena: And I'm Serena, and we are the Mental Health Mamas.


Tina: Welcome to No Need to Explain. We are so glad you're here.

Serena: First, as always, a quick disclaimer.

Tina: We come to you not as mental health professionals or experts in the fields, but rather as parents with lived experience who are on a mission to normalize the conversation around mental health.

Serena: If you or someone you love is experiencing a mental health crisis, please seek professional support. You'll find a variety of resources in our show notes and on our website,

Serena: One of my favorite parts about hosting a podcast is that I get to connect with people all over the world and sometimes I have the opportunity to reconnect with friends from the past. Today's guest is a friend from long ago who recently reached out to me to share a bit of her story. And when I heard it, I knew that it would be helpful for others to hear as well, and I'm so glad that we've reconnected.

Tina: Yes, we love our storytelling. Rachel Johnston is a women's health advocate and consultant with more than a decade of experience in policy, communication, and advocacy. She is a fiercely passionate, maternal health professional working to improve the quality of life for women across the state of Virginia and the country. She currently works with the National Alliance for Mental Illness, or NAMI, training new volunteers and connecting women to essential resources and services. She serves as a development chair for Stop Child Abuse Now of Northern Virginia, as well as serving as a commissioner on the Arlington County Commission on the Status of Women. And she does all of this while being mom to two children, ages four and eight. Amazing. Rachel, welcome to the podcast.

Rachel: Serena and Tina, thank you both so much for having me on the No Need to Explain podcast. I'm very happy to join you and talk to you today about my mental health journey.

Serena: So Rachel, I'm so glad you were able to join us. Rachel and I went to high school together, let's say a few years ago at this point. So we went to high school in what I might refer to as a very idyllic New Hampshire town, in which I'd say there was a certain image to uphold like many small towns. But as we know is often the case, and maybe more often than not, people have stories that happen behind closed doors. So I'm wondering, Rachel, if you can give us a little insight into what your life was really like during that time.

Rachel: Thank you so much for that question. So I grew up in a household by the time I was in fourth grade, my parents had divorced, my mom was a single mom who worked two jobs, one is a public school librarian and one as a librarian at a public library to support my older brother and I. The household I grew up in was also a place where substance use was commonplace and alcohol was the substance of choice. And it became normal to see drinking at all times a day, even in the early morning before work. My parents also had what can only be described as a very tumultuous relationship from when I was very young and into my adulthood, even though my father lived across the country in Southern California. Needless to say, I believe observing events such as substance use, toxic relationships, have a very adverse impact on my own mental health. It didn't surface until much later in life.

Tina: Yes, so we know all ACEs, right? We know that that is, that's a real thing for sure. So let's fast forward to the births of your own children. You had some pretty challenging circumstances around both of their births, correct?

Rachel: I did. So we got pregnant very easily with my daughter and my mom who, as I mentioned, was an alcoholic. Due to her alcoholism, she, her liver started to significantly fail when I was pregnant with my daughter. She got herself on a liver transplant list, but unfortunately it was too late. By the time I finished my first trimester of pregnancy, she had already passed away from liver and kidney failure. And I remember that day like it was yesterday when I got the call from my brother actually, it was very late at night. And she was living in Dover, Delaware and it happened to be pouring down the rain the next morning when I drove there. And I was?just had finished my first trimester. I was also the executor of her estate, which added additional stress as that estate did not close until March of the following year and my daughter was born November 25th. And so she also had a turbulent relationship with her partner, which also added additional stress to the pregnancy working to close out her estate, et cetera.

So fast forward to four years later, my husband and I had significant challenges having my son, we went through the IVF process. That was very successful. And my father and I had reconciled. He had developed late stage Alzheimer's at the point that my son was born. And he had two falls, one he fell off a curb and broke one of his hips. Now he was recovering in a rehab facility, went to a step down facility, and then he got up out of bed to go to the bathroom and then he fell and broke his other hip. And things just snowballed from there. And the next thing I knew, I had my son in the baby Bjorn and I was walking my daughter home from daycare and we were on the phone with hospice talking about end of life procedures. So between those situations and circumstances, it hit me very, very hard. I ended up in just a state of mourning and questioning everything in life.

Serena: Hmm. That is so much to go through in normal circumstances, right? And then on top of that, with the small children, we know how challenging that is, and I can't even imagine. So to me, like it's no surprise at all that you were struggling with your mental health, I think anyone would be. And so in a previous conversation, we talked about sort of your trajectory through that struggle and the trying of different medications. So at what point did you decide that you needed that?

Rachel: So after my son was born, I realized that I was despondent, I was crying and I really realized? After my father passed away, five months had gone by and things really weren't getting better. I knew something wasn't right. I couldn't sleep. Even when I had the opportunity to nap, as we know everyone says, sleep when the baby's sleeping, try to rest at night when the baby's sleeping. Your partner gives you some hours off and try to sleep, but I felt very depressed. So I went to my nurse practitioner for a checkup and told her about these feelings and she prescribed the antidepressant Lexapro for me.

Now, I had always worked full-time, I'd always worked in pretty high power positions and had been around the culture of you can do it. You can do everything by yourself. So I didn't take this medication because at that time, I thought I didn't need it when she prescribed it to me. But things progressively got worse. Activities of daily living simply, simple activities like taking a shower, watching my father pass away. I started questioning everything. And I realized I came to the realization that I needed help. I wasn't able to help my family, and I needed to help myself. So I went, I took myself into a psychiatric walk-in clinic in Fairfax, Virginia, and I saw a psychiatrist and he advised me to take the Lexapro, and so I did. I was actually in Maine at the time after taking it for a couple weeks, and I started to have what's called suicidal ideation. I actually started hearing voices that were telling me to kill myself, and it really irked me. And it really made me question, well, why is this happening to me? And so I came back to Virginia, and I sought out a psychologist that was referred to me by my nurse practitioner. She got me with her psychiatrist, and I was diagnosed as bipolar, and that shocked me. And so I was put on two different medications, and they had been so helpful, and they did work, and I'm so thankful that they did help.

Serena: Yeah, so I just want to back up a minute, and again, none of us are doctors. But the idea that you were given a common medication to deal with depression, anxiety, and it actually had a very opposite effect on you, than it perhaps should have, and this does happen, right? This is, I mean, do you have experience with that, knowing how that affects other people?

Rachel: So I don't, I was told after I'd taken the medication that that's an effect that happens sometimes after I had taken it.

Serena: Hmm, okay. Yeah, so I think it's just something for people to keep in mind as, you know, that it's so challenging in terms of finding the right medications and knowing, you know, what's going to work for you?

Tina: I agree with that. I want to highlight one other thing you said, which I think is really important for people to hear, and I forget the words exactly that you said, but you basically said, daily living was impossible for you. And I think that is, I mean, we don't have to hit that point, but that is definitely the point that one seeks out help because I think we, and I'm just going to say, as women, think we need to deal with all of our health things all by ourselves until we hit a wall. And that's not the case. I think for anybody listening, that for me with our family was certainly when you cannot do any of your daily functions, super important to see someone, and as Serena said, we're not medical professionals, we say that a lot here, and we know from personal experience that these psychiatric meds are really tricky. The right medication can totally change your life as can the wrong one, as we just heard from Rachel. When we spoke to you before the recording, you talked about the concept of your experience with, and I'm not sure I'm going to say this right even now. Rachel, say it for us.

Rachel: Sure, it's called Anosognosia.

Tina: Okay, explain to our audience what this is and talk about your experience with it.

Rachel: So Anosognosia, according to the Cleveland Clinic, is a condition where one cannot recognize other health conditions or problems that one has. And experts commonly describe it as denial or lack of insight. So in my case, I was in complete denial that I was bipolar. The day I stepped foot into my psychologist's office, I've been seeing her probably, for a couple months talking about postpartum depression and sadness and just being despondent. But after talking to me and going through questions and through talk therapy, she diagnosed me as bipolar. And I immediately thought, no, not me. I could not be bipolar because nothing is that wrong with me. To me, the stigma of a condition such as bipolar was so great that I had this fear and apprehension of what are people going to think of me? Are people going to want to be my friend? Are people going to want to hire me? I felt like the degree of discrimination, honestly, for mental health conditions, was pretty significant and pretty severe. And so I was afraid, afraid to tell people, thank goodness I had a very supportive partner that encouraged me to take my medications just to see if they would help. And so slowly, I realized they were working and my denial dissipated. I did a lot of reading on bipolar and the more I talked to my friends about it, the more I learned there was even one person in my circle that was also bipolar around my age. There was also another person that had a parent that was diagnosed as bipolar. So that helped normalize it for me. The more I talked about it, I realized that I believe it's 2.3 million Americans or many Americans, a small percentage, but many Americans, highly function as bipolar. And I realized that I wanted to do anything I could do to decrease the stigma around bipolar and mental illness.

Serena: So interesting, we talk a lot about stigma. And I don't think we often talk about the idea of, you know, stigma towards ourselves, right? And how that can get in the way of seeking treatment. And you're right, once we start talking about these things, we learn we're nowhere near as alone as we thought we were. Tell us about the ways that you came to terms with your diagnosis of bipolar.

Rachel: Sure, so I do a lot of reading, I did a lot of thinking. It took me, it wasn't easy. It took me a while to realize that it was okay, that I was gonna be alright. And I listened to my friends and family and my therapist because my mom had been an alcoholic that I'd been in denial her whole life. I went to a lot of Al-Anon meetings and that really helped. I kept coming back to the Al-Anon meetings. I kept coming back to continue to see my therapist. And I took the medications and I got better. And I realized that being bipolar is just a small part of who I am. I got strong mentally and I remember what friends told me years ago that getting healthy mentally was just as strong as being healthy physically. And this time I believed it. I remember being back in my second home of Austin, Texas with a girlfriend walking around a lake and her telling me that mental health is just important as physical health. But at that time, I was in my mid-20s and I was working 12 hours a day. I had energy to work out two hours a day. And for me, it was the, oh, that's not that important. I don't need it. I'll get to it later. And what I realized retrospectively is that I wish I'd gone to therapy much earlier life to deal with the issues that are brought about with my parents' alcoholism and relationship issues, et cetera. So how did I come to terms with it? By doing a lot of introspection and with my therapist and psychiatrist, really talking to them and learning about the condition and what it really means.

Tina: Yeah, we can totally relate to this because Serena and I, well going on eight years of friendship and intimate knowledge of the other's stuff, right, Serena?

Serena: Yeah.

Tina: I feel like we like information for sure and this is why we do this is to normalize things. You are not alone. And as my mother always says, I think everybody needs a therapist. Everyone would benefit from a therapist no matter what your situation, right? It's someone to talk to some neutral person who helps you see things in a way that you might not see. Yeah, anyway, I love all the things you're saying and I wanna say just as a parent of a child who struggled, I never cared what they called it as long as somebody could help her and that's where it gets murky, right? Is with the medicine and like, what is it? And can we appropriately name it so that we can get things? And it's not the same for everybody and we get this. So anyway, we could go on and on about that. So you are doing well right now and we're curious about what things help you continue to stay well, how do you take good care of yourself?

Rachel: Well, first of all, I wanna say that self care is a phrase that's used a lot nowadays. And for me, it's so important and I think for a lot of individuals out there and our country and the class of the world, it's important to have a routine, to have something that you're passionate about also and that you care about and to focus energy on things that bring you calm, bring you satisfaction, but I'll never forget my therapist told me one day, what brings you joy? Right down on a list of things that bring you joy and think about those when you're in a quiet space and how will those help you make an impact in life that matters to you? Because that's what's really important to me.

So how do I stay well and stay healthy? I still see my therapist once a week, I work out two to three times a week, the trifecta of being mentally healthy, a lot of individuals say exercise, nutrition, and sleep. And so I really do try to exercise, to eat healthy, to get sleep when I can, but additionally, I love music, I love the arts. So I listen to upbeat playlists when I work out and I prioritize spending time with family and friends that really bring positivity into my life. Family and friends that are people that care about the same things I care about.

So with me, it's really important as I mentioned to give back to my community. So I really stay focused with my work as a volunteer with the National Alliance for Mental Illness on their helpline. So in the last year and a half, as a volunteer on the helpline, it has shown me how many people out there with different mental health conditions, really need support. And so every time that I take a call or a text or someone who's on the chat feature and I help connect them to resources they need, it also has the effect of making me feel like I'm helping someone that, or a family member with someone that has a mental illness, such as myself, and I'm helping them help their family member or themselves be well as well. And also the other two projects that I work on with Stop Child Abuse Now in Northern Virginia, and the Commission on the Status of Women. To me, helping women, children, and families is at the core of who I am because of my upbringing, because of how I was raised and what I went through. And so with those three organizations that I work with right now, to stay well, I spend time with family and friends and I commit myself to my work and I try to keep a routine.

Again, a girlfriend I went to graduate school with three or four years ago after my son was born. She said, make a routine, stick to the routine, so you know things that you can count on. Every day at this time, I'm gonna work out and then I'm gonna do three hours of work. I also lead my daughter's Girl Scout troop and currently I'm the treasurer of her Parent Teacher Association. So I make time for those things. And I also try to, I wanna let our listeners know that I think as women, sometimes women take on more than they can at times. And so I'm also learning to know my bandwidth and to create boundaries. So one does not take on too much and can stay healthy and stay well.

Serena: Boundaries are super important and so hard, yeah. So knowing that you were struggling with coming to terms with your own diagnosis and it sounds like this is a common experience for many. How can people out there, loved ones, support someone who might be struggling with Anosognosia?

Rachel: So I think a couple things. The main thing is to be supportive, be as supportive as you can and just listen, listen, listen. It's important to hear, to be present and to know that the person that is struggling with Anosognosia is in the state of more than likely fear and they're scared. And so if the partner is supportive, listening, being empathetic, trying to put yourself in their shoes, I think those are really important things to remember and to do. I had a really strong partner who is my biggest advocate and he still is to this day. He listened to me, he encouraged me as gently as he could to get help and to listen to the professionals. He would always say that they do this for a living, they are the experts in this, they're well trained in mental health conditions. And be there for your loved ones and let them know that their support system is ready, willing and available to support them.

Tina: Awesome.

Rachel: There is one book by an author and name, Javier Amador, called I'm Not Sick, I Don't Need Help and on the NAMI helpline, we do bring that book up. That might be helpful. I have read the book and I do think that listening and being empathetic is two of the best things a supportive partner, friend, coworker, can do for someone who's struggling with Anosognosia.

Tina: That's great and we will put that book in our show notes so people can access that. Yeah, so before close the episode today, Rachel, we're curious if there's anything you haven't said that you'd like to put out there to the listeners.

Rachel: Well, I just want to say thank you so much for having me on the podcast and thank you to our listeners. I just want to remind everyone that mental health and wellness is so very important and encourage everyone to stay well and remember as we've mentioned on this podcast that you're not alone and to please seek help if you think that you are feeling down because help is out there and we want everyone to be well and be the best that you can be.

Tina: That's awesome. And we of course thank you so much for joining us today and being vulnerable enough to tell your story, right? I think it's important that people hear? If we want to normalize things, it starts with us, right? We just normalize, normalize, normalize, so thank you.

Serena: And thanks Rachel, it's great to reconnect with you and yeah, we wish you all the wellness in the world.

Serena: And so podcast friends, we are as always grateful for all of you listening and supporting us. You can help us out by visiting Apple Podcasts, leave us a review, subscribe, and please share the podcast with others. You'll find more content on our website. You'll find us on Facebook, Instagram, Twitter, and we have a voicemail that you can call. You'll find the number in our show notes. Call and tell us what you think of the podcast. Send your ideas, share a bit of your story or just call to say hi.

Tina: We would love to hear from you. And this is your gentle reminder to take good care of yourself while you're also taking care of your people.

Serena: Thanks so much for listening.

Tina: Bye.