Overcoming the Self-Stigma of Mental Illness (Part 2)
Part 2: Surviving Disintegration and Forging a New Path
The other two posts are here: Part 1 and Part 3.
Content warning: suicidal ideation.
In the first post of my series on overcoming self-stigma, I shared journal excerpts and artifacts from my past to tell the story of becoming a chronic psychiatric patient in my 20s. After growing up identified as gifted, I felt like a failure when I didn’t meet my expectations of success immediately after high school. No one had ever helped me understand giftedness beyond achievement or as an inner experience in its own right.
I looked for answers from psychiatry and the DSM. But perceiving myself as mentally ill led to self-stigma and feeling disempowered.
What are stigma and self-stigma? How is self-stigma different from internalized ableism?
When we use the word stigma, we’re usually talking about social or public stigma, which is the prejudice and discrimination directed at a group of individuals. You can google “stigma” and find that much has been written on this topic, and the term has applications beyond mental illness. People can experience stigma because of cultural differences, racism, obesity, or being queer, trans, nonbinary, etc.
My first personal experience with public stigma was during high school. I’d gone for help at the local mental health clinic in my town, and the response from my family showed me that this was perceived as shameful. I described it in No Guarantees. My grandmother asked me, “What are you trying to do, ruin our family name?”
I remember being shocked by that question. At the time, I was struggling with suicidal ideation, and I wondered, who cares what other people think about me going to a therapist? Would they rather see me dead?
Fortunately, things have changed since I was a teenager, and it has become easier to talk about anxiety, depression, and even suicidal ideation. But we still have a long way to go.
Self-stigma is the consequence of internalizing the stereotypes and negative attitudes about one’s group. The work of Dr. Patrick Corrigan helps understand the impact of self-stigma on people identifying as mentally ill, and I recommend this paper by Corrigan and Rao for more.1 Here’s an excerpt that describes well my experience of self-stigma during young adulthood:
Once a person internalizes negative stereotypes, they may have negative emotional reactions. Low self-esteem and poor self-efficacy are primary examples of these negative emotional reactions. Self-discrimination, particularly in the form of self-isolation, has many pernicious effects leading to decreased health care service use, poor health outcomes, and poor quality of life. Poor self-efficacy and low self-esteem have also been associated with not taking advantage of opportunities that promote employment and independent living. (Corrigan & Rao, 2012, p. 465)
It’s hard to express now, nearly 30 years later, but being hospitalized at age 21 felt like the end of the world. I had internalized the stereotypes and stigma of mental illness, too, and it felt like my life was over.
It’s important to emphasize that this was not the message my doctor gave me during that hospitalization—quite the opposite. After psychological testing, I was again told that I was highly gifted, which I knew because I’d grown up with this information.
I still remember the conversation with my psychiatrist and his confidence in my ability to succeed. He told me I wasn’t like the other patients, who were mainly indigent, without stable housing, and addicted to drugs. I had a supportive family and the intellectual capacity for high achievement. But I identified with the other patients. I didn’t see myself as different from them, and I knew already that my giftedness wasn’t enough to succeed.
This is what I wrote during the week after my first hospitalization:
I'm out of the psych ward and I'm still having a hard time not killing myself. It's not even that I'm depressed, I just have the urge to die. This is how I feel on four different psychiatric medications. I thought all day about overdosing or slitting my wrists. It's fucked up. I don't want to feel this way.
I shouldn't have to be sorry that I left the hospital. I should be glad to get on with my life. Not that it's much of a life anymore. I wish I could be normal, whatever that is. Of all the obsessions a person can have, mine has to be with suicide. Do the people around me think that I'm going to die? That's the impression that I get—that I make people nervous. I can understand where they're coming from because I do think about some scary things. Just this morning I wanted to take a bottle of pills.
It's not my fault. Life is a mystery to me, and I'm not interested in leaving it yet. But it's possible for me to kill myself anyway. That's a twisted way for things to be. That's what I've done recently, I've had that urge to kill myself and I've gone to the hospital. It doesn't make sense to people, and they don't believe that I'm really suicidal, but I am. It's just another part of me, and at that moment the part of me that felt like living was stronger.
I know that my way of thinking isn't normal, and I'd like to get rid of these problems. I guess the bottom line is that in a way my mind is obsessed with suicide, and I won't really rest until it goes away. There are times when I can't take my mind off suicide. I used to write poetry to help me deal with these feelings. Now I have defense mechanisms in my head that I use to keep me alive. For example, if I begin obsessing over suicide, I think through what would happen if I died. I think about my funeral, and how my family and friends would feel.
I'm not afraid of death and I don't think that I ever have been. It's a part of life and I deal with it. Unfortunately, I'm one of those people who aren't entirely convinced that it isn't okay to take one's own life. When I'm depressed, I rationalize suicide by thinking, it's my life, why can't I take it if I want to? Then I try to look at my life as a gift that my parents gave me while making sacrifices of their own. When I change my perspective, suicide becomes much more difficult. (Journal entry, age 21)
My ambivalence about being alive had already been a problem for years by the time I was 21, and that wouldn’t change for several more years to come.
Writing has always been a method of autopsychotherapy, and I have no doubt that it sometimes kept me alive. It helped me collect my thoughts and work out how I was feeling. But it’s also clear from the excerpt above that I could enlist my imagination to assist me in staying alive by imagining the consequences of suicide.
Nearly a year and a half later, I still struggled with ambivalence.
It's hard to figure out what I should be writing about to deal with some of the issues I have. I guess always feeling like I'd be better off dead is one... It isn't that I'm suicidal—I'm not plotting and planning anything. I just sort of obsess over the thought. I don't feel like I'm a part of the world, I'm just a visitor here and I don't get the membership privileges everyone else does. I feel like I should be roaming the Earth, touching people's lives when I can. It's like I have a host family, and we've become really attached, and they have a reality but I don't. I don't mind staying with them, but I feel like I'm wasting away. Unfortunately, no one understands how that feels. That's probably why the world makes me panic. (Journal entry, age 22)
Eighteen months later, I was on disability and had been hospitalized five more times. We can see that my imagination was now causing problems for me rather than helping:
This is the fifteenth page I've written in here about suicide. I didn't realize that I had so much to say. I figured out that the problem is getting my brain to change its mind about what the next part of the story will be. I think I'm doing a good job keeping myself from acting on what I'm seeing. What I do see happens in Connecticut, not here. That's the problem, though. I'm seeing a scene in my head, and it doesn't seem like such a bad idea. I don't think that's it's as dangerous as actually being depressed and thinking about suicide. I wonder if I could stop thinking of life as a story, although I'm not sure that I'd want to. That's how I keep my mind occupied. (Journal entry, age 23)
In episode 8 of the podcast, I talked about having an imaginal world for many years and the implications of that mental process throughout my life.
This is a good time to bring up ableism and internalized ableism.
Ableism is prejudice and discrimination against disabled persons. Internalized ableism is how we take in and absorb society's judgments and negative beliefs about physical and mental health. Most cultures value and privilege able bodies over disabled ones. This is something that happens automatically because ableism is pervasive, and it isn’t challenged the way racism, sexism, or other isms tend to be questioned in modern times. We apply these beliefs about disability to ourselves without realizing it’s happening, which is something we must consciously unlearn.
Having a brain that works the way mine did felt wrong and broken. It was always painfully obvious that I was different, but it also wasn’t clear why I was so different. Because I didn’t understand giftedness as a kind of neurodivergence or know that I had other kinds of neurodivergence, I assumed something was wrong with me.
If self-stigma meant that I felt less capable, and it led me to self-isolate, my internalized ableism kept me obsessed with somehow becoming “normal.” For too many years, that was my goal.
Things aren't getting better for me. They're really not. I think I'm going to start crying. I want to hide here in my bedroom. If I don't communicate with anyone, I'll be okay. Why am I feeling this way? Why am I such an asshole? Why can't I be normal? I don't deserve to live. (Journal entry, age 24)
It wasn’t until I was in my 40s that I realized being normal was an impossible goal for me.
Being on disability for more than a decade meant that I had plenty of exposure to negative beliefs about being disabled. Most people don’t think much about the stereotypes and prejudice around disability, but they’re serious.
“Disability—a social status that incites both hostile and benevolent forms of prejudice—a group that provokes stereotypes of incompetence and dependency, and behaviors that range from staring and unwanted assistance to abandonment, dehumanization, and hate crimes.” Michelle Nario-Redmond
As mentioned in the previous post, going on disability was a blow to my self-efficacy, and I saw myself as mentally defective.
Reclaiming Self-Efficacy
As you know from Part 1, I went to Kansas State University when I was 25, after being on disability for mental illness for nearly two years. It was my second time leaving my parents’ home and attending school as an out-of-state student. I lived in the dorm with mostly first-year students who were 18 years old.
I was a chronic mental patient when I went to K-State. It was my main status at that point. It was the biggest part of my identity. I saw myself as bad enough to be on disability.
At K-State, I was very asynchronous2. Not only was I twenty-five years old, but my life couldn't have been more different from the kids I was around. They were the way I was at 18. When I hadn't known real despair yet. It wouldn't have seemed possible that I'd end up the way I did. No one would have predicted it. (Journal entry, age 41)
The day I moved into the first dormitory, I wrote about being tired because I took so much medication. My doctor had me on a high dose of Zyprexa, an antipsychotic, and I went to the director of my residence hall and asked him if I could get into my room early because I could hardly stay awake.
I'm at my dorm, waiting to be able to check in. I asked for the special favor of having them clean my room now, so I don't have to wait until 5 pm… I hope they can do something for me. I explained that I'm on a lot of medication and will need to rest soon. It's no lie. I had to explain to the director why he should prioritize my room, and I explained as best I could without saying that I'm mentally ill. I don't want to have to come out and say it. I'm not stupid, I know about stigma. (Journal entry, age 25)
From the start, I connected with the Disability Resource Center. A bright spot in my time at K-State was how responsive and helpful their staff were. I was a challenging student who presented serious issues, and they were always there for me.
After two months, I had to leave and return to Las Vegas. It felt like a failure of monumental proportions. I described shame on several occasions, which I usually expressed as a desire to hide.
One of the things that surprised me when reading the entries from that time was how I managed to keep my self-talk mostly positive. This is what I wrote while flying home to Nevada:
I was thinking earlier that this semester wasn't a total waste. It was a learning experience. I made a lot of friends here, and I saw that I'm capable of socializing. I'm capable of doing a lot. (Journal entry, age 25)
Unfortunately, I can’t say that I got home and things improved. I ended up hospitalized again within days, and repeatedly that fall. I started dating another patient, and we used drugs together.
The last time I was hospitalized for mental illness was in December 1998. Over the next ten months, I experienced a paradoxical situation in which I nearly destroyed myself and somehow regained my self-efficacy simultaneously.
Culture Shock and Waking Up
After not working for four years, I finally got a job. I drove a truck delivering phone books to businesses all over Las Vegas. The other employees were all homeless men, and we often got high together during and after work. I had moved to one of the poorest neighborhoods in the city and was living first at the Moulin Rouge, which has since been demolished.
Even while using drugs, I was always reading, writing, and asking questions. With the men I worked with, I wanted to know where they were from and how they ended up unhoused and working with me. I was born to be a qualitative researcher and never stopped conducting informal interviews and trying to understand people.
Everyone else would be playing cards and drinking beer while I was writing in my journal or reading a book. People started asking me questions, too.
Why was I living there? Why was I throwing my life away?
I would reply, don’t you realize I’m mentally ill? And an addict?
No one ever agreed with me that I was a lost cause.
Slowly, I realized I was more capable than I’d given myself credit for. I began to let myself imagine a future where I wasn’t getting high every day. This was a future where I wasn’t a mental patient any longer, and I was helping other people find a way out of being stuck.
During a time when I was smoking crack daily, I wrote out the “Aspirations of my heart.”
To make it living on my own.
Go back to school.
Stay clean and not fuck up.
Become a social worker.
Become a consultant.
Honestly, I have no idea what kind of “consultant” I wanted to become in 1999, but it’s part of my current work description in 2023.
In October 1999, when my parents decided to move from Las Vegas to Los Angeles, they offered me the chance to move with them. What frightened me the most was moving to California and repeating the same mistakes I’d been making.
On the last day in Nevada, while loading the moving truck and preparing to leave, I had a moment of illumination. It was nearly 24 years ago, and I still remember it vividly. I described it in an email to Michael Piechowski on July 18, 2016:
An epiphany came on the day we were loading up the truck and emptying my parents' house. I stood in the driveway and felt a sense of peace that was so strong and true that I knew I would succeed. I would do the things I had not been able to do in Las Vegas or Kansas. Or Connecticut or Arizona. In California, I would be myself. I didn't see it as a re-invention of myself, but I would stop hiding behind a baseball cap and piercings.
In the first week, I did the tough things. I threw out my hat. I removed the four piercings from my eyebrows. I bought appropriate clothes to wear for a job interview. And I got a temp job at my future husband's company. With each day, it got easier.
I worked at that job for the next several months, and that is indeed where I met my husband, Jason Wells.
During the first few months in California, I struggled to feel like a part of the world. Part of my epiphany was that I would never smoke crack or use hard drugs like meth or heroin again. It wasn’t easy to go from being high all the time to working full-time, but I managed.
I was tested right away after moving when a man at the motel where we were staying offered to sell me crack, and I said no. I knew then that I was going to be able to make it.
A New Life
When I was first dating Jason, I warned him about me. I told him that I was mentally ill and had been addicted to drugs several months earlier. He didn’t see me as broken, the way I saw myself. He saw me as a capable tech support agent.
It took a long time for me to recover from some of the traumas I experienced during my last years in Las Vegas. During the first summer I lived with Jason, I was grinding my teeth at night and waking up from nightmares.
I immersed myself in books, kept learning about computers, and started unlearning some of the behaviors that had held me back. Learning to be in a healthy relationship was another challenge, and I’m grateful for Jason’s patience and kindness during those first years. We lived in his tiny apartment in Beverly Hills for our first ten months together.
In the fall of 2000, I decided to take a class at UCLA Extension on object-oriented programming because my primary interest that year was computers. After failing to complete many classes at multiple schools, I was nervous about failing again.
But things had changed, and I finished the semester and got an A in the course. It did wonders for my self-esteem. We moved to Woodland Hills to a bigger apartment, and I got a job at a software company in Calabasas. I struggled to work and was still on disability, but I worked with a therapist and kept trying to succeed. As I said in Quick Bite Episode 40, I felt like I was in the wrong place at every job I've ever had. At least, that was true until the past few years.
I feel different. I am not like other people. It's as if all the issues and problems of the world weigh heavily on my shoulders. I am spending my time in the wrong place. I should be spreading the message, helping people, giving myself to the cause. The cause being that the world is filled with poverty and suffering. I can help.
Writing helps. My life is interesting, and not many people have lived lives like mine. What's funny is I'm still alive and things are still happening. At times I make things happen and sometimes things happen to me. I know my place in the world. I cannot languish in this life anymore.
I couldn't make it without Jason. He's my partner, my soul mate, and my best friend. He empowers me with his love and strength. We are very different people, yet we completely belong together.
I can't submit to feeling this way. I've got to find the answer. I think that these are things I need to talk to Jason about. There are tears in my eyes. I could cry, but that would be inappropriate. Appropriateness is very important in the working world. (Journal entry, age 28)
In January 2002, I returned to school full-time at Los Angeles Pierce College. I got an A in every class I took at that school, and it felt amazing to feel like I was finally living up to my potential. In the spring of 2003, I turned 30, married Jason, finished my associate’s degree at Pierce, and graduated as a President’s Scholar.
I transferred to California State University, Northridge, where I majored in sociology with a concentration in social welfare. A year later, I was applying to social work graduate schools, and we moved to Colorado in 2005 following graduation so I could attend the University of Denver.
Here’s a photo from my CSUN graduation with Dr. Herman DeBose, one of my first mentors. I worked as Dr. DeBose’s research assistant during my senior year and received an award for excellence in sociology.
In May 2006, I gave birth to my son, Jack, while wrapping up my first year at DU’s Graduate School of Social Work.
Throughout my undergraduate education and my master’s degree in social work, I continued to see myself as mentally ill. I remained on disability and under the care of a psychiatrist and therapist for years. It would be another decade before I started questioning the bipolar diagnosis, which was the opening to rethink everything else.
The third post in this series will cover my autoethnographic work, discovering Dąbrowski’s theory, stopping medication, and learning to accept and love myself for who I am.
Corrigan, P. W., & Rao, D. (2012). On the self-stigma of mental illness: Stages, disclosure, and strategies for change. Canadian Journal of Psychiatry, 57(8), 464-469.
See Interesting Quotes, Volume 8, for more on what I meant by “asynchronous.”
Omg.. it is so heavy to read. You overcame so many difficulties and now helping others who are facing difficult life circumstances.
Thanks 🙏