Depersonalization disorder is the scariest and most unsettling condition I’ve ever experienced. A lot of people have never heard of it before–I hadn’t until I started feeling the symptoms. It’s a dissociative disorder on the milder end of the spectrum, along with dissociative identity disorder (formerly known as multiple personality disorder) and dissociative amnesia (episodes where you forget what happened/who you are during a certain time period or even black out). Even though depersonalization disorder is considered to be on the mild end of the dissociative spectrum, it’s extremely frightening.
I had the disorder for over 3 years. It was at its most intense for 9 months, and then shortly after my mom passed away, it lessened, but it was still with me on a daily basis. The symptoms of this disorder, which I’ve come to understand is a severe form of anxiety, are difficult for those who haven’t experienced it to understand. Here are a few of the symptoms I experienced in those first 9 months when it was at its most intense:
1. Even though I knew it wasn’t true, I had this nagging feeling that the world wasn’t real. That I wasn’t real. That nothing mattered. It sounds like depression but it really wasn’t: I honestly would feel that nothing seemed real. Everything took on a “fake” quality. Things, people, and places appeared distorted and unfamiliar.
2. I didn’t feel connected to the people I loved. My friends and family who I once felt close to felt disconnected and far away. Like I didn’t know them anymore. I recognized that I did know them, because depersonalization isn’t a form of psychosis, and on a basic level I knew nothing was different, but there was an intense feeling that I wasn’t close to anyone I knew anymore. I felt withdrawn.
3. I felt extremely disconnected to my own life, like I didn’t recognize it anymore. At times I didn’t even recognize myself in the mirror. I recognized that the reflection was me, but it didn’t feel like me. I felt disconnected to my past and present. Like I didn’t know who I was anymore.
4. Everything seemed really scary. I didn’t want to get out of bed. I didn’t want to do anything. Situations that normally would give me a small amount of anxiety were magnified by 1,000. My brain was overwhelmed, in a constant state of fight, flight, or freeze mode. I didn’t know that at the time– all I knew is that I was frozen and terrified.
5. I was preoccupied with existential questions about life and death– especially death. I can’t remember the exact thoughts I had because this was a few years ago, but I do remember that my mind was obsessively fixated on these existential questions and ideas.
6. I couldn’t focus on anything. I had to drop out of school. I could hardly even read a sentence because my mind was so overwhelmed and afraid.
7. Things looked weird/off. I even felt dizzy at times, like I didn’t have my footing. I went on a hike and was terrified I would fall off the cliff due to this sense of unbalance.
8. I had a constant feeling of tightness around my temples and like something was blocking part of my brain. Things seemed distant and far away. My mind felt fuzzy and useless. I think it was my brain’s attempt at protecting me.
9. I obsessively and often unsuccessfully searched for a cure. I spent hours online reading forums about depersonalization, I read the very few books that have been published about the disorder, I read research papers and web articles about it… My point is that the disorder can be very obsessive because of how disturbing it is to feel this way.
10. I felt like I was going crazy. In a way, I was. But in reality, I was aware of my surroundings and I wasn’t hallucinating, hearing voices, or seeing things that weren’t there. So I wasn’t experiencing psychosis, but I still felt like I was losing my mind.
11. I kept thinking about my problems, other than the obvious– that my mom was dying right before my eyes, and my family was falling apart. I obsessed about my relationship, over my status as a premed student, over other family problems, about what I wanted to do with my life– pretty much anything to keep my mind off the obvious. Again, with the obsessing and my mind’s attempt at blocking out the truth.
This all started about 4 months after my mom was diagnosed with pancreatic cancer. I think I was in a state of shock and disbelief. I didn’t want to accept what was happening. I had never really dealt with anything too difficult in my life before, and my already overwhelmed brain as a (former) premed student couldn’t handle it. Essentially I was having a mental breakdown. I’ve learned how to cope with stress a lot better since then, and how to recognize when my mind/body has had enough. Here are some characteristics that I think contributed to my developing this scary disorder:
1. I was somewhat of a perfectionist. I was an overachiever in school and always pushed myself to my academic limit. At the time, I was taking physics with a lab, biochemistry, and a couple of other difficult classes. I was also doing an internship at the hospital and had a part-time job at the library. I shadowed a pediatric oncologist. I had a boyfriend. I was a chair member of a club. I was trying to exercise frequently and eat right. I was stressed about money. I went out and partied on the weekends. On top of that, my family, who I’d been close to my entire life, was thousands of miles away falling apart. Even without my mom being sick, I had a lot going on, and was living an unsustainable lifestyle.
2. I was taught not to be very expressive of my emotions from a young age, and to ignore problems until they went away. This coping mechanism could no longer serve me. My mom dying of cancer wasn’t a problem that would just go away. I had to face it.
3. My family and I didn’t know how to talk about what was going on. I don’t place the blame on anyone–we really didn’t know what was going to happen and my family was trying to stay positive. But as a result I felt really isolated. My relationship with my family, who I’d been close to my entire life, was completely strained to the point where I couldn’t talk about anything with them anymore because they were busy dealing with my mom’s illness in California while I was away in Wisconsin at college.
4. I didn’t know the importance of self-care. Essentially, self-care is recognizing your needs and taking care of them accordingly, before or in addition to dealing with other less essential tasks. It’s being nice to yourself and your body, respecting its wishes, and listening to it. And it’s something most of us take for granted.
5. I already had an anxiety disorder. I had social anxiety disorder. I had been struggling with it + self-esteem issues throughout my life, especially as a teenager (which I still was when my mom got sick).
6. I was experiencing trauma. This is a commonality for everyone who experiences depersonalization. For some people, it’s a phenomenon that lasts briefly, similar to an “out of body experience.” I was experiencing a prolonged period of trauma and I didn’t have the resources to deal with something so ongoing and intense. I was losing connection with the person I had been closest to my entire life at an age where I wasn’t well-equipped to handle it.
7. I was 20 years old when it started. According to a study by the British Journal of Psychiatry, the mean age of onset for depersonalization disorder was 22.8 years old. It’s more common amongst teenagers and people in their early 20s. I think it’s because our brains are still developing and we haven’t necessarily developed the resources or learned how to handle trauma.
So, I think all of these factors made me prone to developing the disorder. Now, I’m going to talk about my experience with it a bit more, and how I finally overcame it. Three years or so out, I can officially say that it’s not a daily problem anymore. It only pops up about once a month for a short period of time, and I know how to get rid of it. Here are the top things that I did and continue to do that really helped me overcome depersonalization disorder:
1. I started going to therapy. Even though I had a stigma against therapy and people who saw therapists, I was desperate. Depersonalization disorder is something that affects a very small percentage of the population, so a lot of therapists don’t even know what it is, and there isn’t much research about it. Therapy wasn’t what cured me, though it did help a lot at the time. I’m not currently seeing a therapist, but if I ever felt it was necessary again, I wouldn’t hesitate to find one.
2. I went to an intensive daily therapy program after the initial therapy because my anxiety/depersonalization (I used the term interchangeably) was still so bad. It was hard for me to socialize with others, concentrate, and fully feel like myself again, even a year and a half after my mom passed away. At the outpatient program, I learned a lot of useful skills about relationships, causes of anxiety, grief/loss, trauma, self-care, and more. It was a really helpful program, but it also didn’t cure me.
3. I exercised a lot and tried to do activities that made me happy. I reinvented myself. Academic achievement had always been a huge part of my identity, but at that point in my life, it was extremely difficult for me to focus on school. I had to find new things that inspired me. I started hiking, running, surfing, doing yoga, climbing, and more. Being outside and getting all that exercise gave me endorphins. I also met some new people. I socialized even when I didn’t feel like it. And believe me, it was almost excruciating at times to make that effort. I felt so abnormal compared to everyone around me, but most people I was hanging out with would tell you they had no idea anything was wrong with me. I think my social anxiety was on full blast due to the depersonalization and my hyperactive amygdala (where the fight or flight response comes from). Even though what I was experiencing was absolutely horrible, I still had some fun times.
4. Time has passed since my mom died. As they say, “time heals all wounds.” Time definitely helped lessen the severity of the disorder, which I think was directly related to losing my mom and experiencing her suffering. After those first 9 months or so, I had more moments of clarity when I didn’t feel depersonalized. However, I still had more work to do because time by itself doesn’t actually heal you.
5. I spent a lot of time journaling and remembering my mom. I cried my eyes out. I faced my grief and felt those intense emotions that had been stuffed inside without me consciously realizing it. I looked at photos of her, set up a memory area of her in my room, created a memory/grief box, went to a few grief support groups, and tried talking about it with loved ones (though that didn’t always go well). Grief is a process that you truly have to process. In my case, I had to make an effort to do it because my mind was trying so hard to protect me from the reality of the situation. But when I did face it, I felt more real than ever before. I think this would help people with all types of traumas–journaling about it and reshaping the trauma as something that happened in the past that no longer needs to be hold onto by the mind and body. These activities helped me feel connected to her again, connected to my past, and reconnected to myself.
6. I learned how to meditate, about mindfulness, and started practicing restorative yoga. It helped to focus on my body and feel connected to it again. In our society, a lot of weight is placed on the mind–intellectual pursuits, getting tasks done, etc. We don’t generally take time to focus on the body and give our brain a rest. Meditation helps me do this. It helps me focus on my body and even discover difficult feelings that I didn’t know I was having because my brain and body can become so detached. There are even meditations that directly deal with handling difficult emotions, and I’ve had many meditation sessions end in tears. It helps me release a lot of tension and feel more alive.
7. I finally found a medication that helped–BuSpar! There are no medications currently that are prescribed specifically for depersonalization disorder. I had been using Ativan on a daily basis which isn’t healthy, and I became addicted to it. When it became clear that antidepressants didn’t have any effect on my anxiety/depersonalization, my psychiatrist decided I should try BuSpar, a longer-acting drug similar to an antidepressant in that it takes a while to work, but also similar to Ativan because it acts on the same receptors as Ativan. By the time I tried BuSpar, I was feeling a lot better than I had initially, but still dealt with episodes of depersonalization on a daily basis. So I definitely wasn’t 100%. But now I can say I’m probably at 90% in terms of anxiety. Some situations still give me those anxious feelings, like going to crowded stores (clothing and grocery shopping), but in those cases I either ignore it or take a faster acting anti-anxiety med.
8. My family and I have been working at rebuilding our relationships with each other after losing my mom. It’s been extremely hard on all of us. A lot of resentments and hurt feelings have come up during the time we’ve all been grieving over these past 3 years, just due to the fact that we were grieving someone who meant the world to all of us. But we are all on the road to healing enough that we want to be close again, which means we have to learn how to be close without her holding it all together. It’s been a learning process but I am happy to say I think we are now closer than ever before.
Feel free to comment with questions if you are struggling with depersonalization disorder and want help finding a way out. Everyone is different and different things will work for different people. I wanted to share my story because when I was experiencing depersonalization, there wasn’t a lot of hope online in forums about depersonalization, other than a few glimmers. And it was those few glimmers I did read that gave me the hope to keep on keeping on.