Dealing with the world outside the mental health bubble & shame

I finally got caught up with all the text messages and emails from friends I’ve missed out on for over a month. Friends outside my mental health bubble, but friends nevertheless, in the Facebook definition of the term. The reason (and not the excuse) for leaving them unanswered was because at the time the anxiety of concocting a response probably would have caused another episode which I could not afford. It took nearly a month for me to recover enough and to have enough courage to even write a reply to a simple, “Hey, how are you doing?”

Well, there is the honest answer and the not honest answer to that. But would it make sense for them to hear that it’s been the worst time in my life? Was it just pure shame? After consideration, I tell them that I’m sick and in treatment for a neurological disorder.

The friends who are outside of this bubble consist of the following:

  1. the coworkers I remained friendly with, but don’t know me that well,
  2. those who seemed or have proven to be scared/ignorant/judgmental about mental illnesses and those suffering from them,
  3. those who don’t know how to act around me post-hospitalization (other than saying I’m so sorry, like someone died), or doesn’t act the same way around me or have abandoned me since the diagnosis
  4. and those friends that I just can’t really tell whether or not they will react well to the news because I’ve never spoken them about it.

This could all just be me making it up in my head. It’s possible that people are kinder than they are in my head.

Then there are those inside my mental health bubble that I can share what is actually going on.

  1. my parents
  2. my treatment team (therapist and psychiatrist)
  3. friends who work in the mental health field (there are very few of these people in my life as I have not worked in the industry)
  4. friends who are also going through similar struggles from group therapy
  5. other writers/speakers/bloggers who write about their stories

Why must I isolate myself, or make up a vague story to cover up a very important part of my life to just get by and to not be found? That’s what guilty people do because they’re ashamed, but I haven’t done anything wrong except to have won the lottery to have a stigma filled disorder. I found this to be very uncomfortable to be nontransparent to those I used to call “friends.” Sure, the ones that work in the industry I might go back to might not get the full details because employers will not look at my illness favorably if they find out- it seems to be a literal death sentence to your career in my field. But the friends who you used to be close to, but do not know the whole story about why you dropped off the face of the earth? That’s tricky, especially when it’s over a text, you can’t know their genuine reaction, so you wouldn’t know how to respond appropriately. Do you respond with a psych education video, or do you laugh it off like it’s nothing?

I sound a little paranoid, I know. But I feel like I would have to make a decision now on how to tell the people I meet in my life about what is going on with me, as someone who isn’t fully stable (yet). I don’t want to be someone who is inconsistent and flaky, but that’s what I do sometimes to take care of myself- that has not gone well received/ understood. Part of me wants to out myself to everyone just to show them. Fight the stigma by showing them all that I’m not what they imagine I am. But it’s pretty scary, and I fear the silent rejection and ostracism that I may have to face. I may not have enough courage for this one yet.

 

Some thoughts about authenticity

I’m sitting by my window, my new window, I should say, where I can see the beautiful Manhattan skyline better than I have ever before. It’s night, so the lights and the cars on the Williamsburg bridge twinkle, but there is enough water between us that all is quiet. Quiet city living is an oxymoron and I thought I’d never achieve it, but I might have,  finally. With the (final) move done, I’m more than relieved and thankful that I will be spending most of my time recovering peacefully in this neighborhood.

Tuesday means it’s therapy day. Therapy has finally been nudging at something in my head that seemed to have been stuck for ages. The core of the problem. It’s one of those times when all the information you need has been there all along, all your past history, the trials and tribulations, but it just hasn’t been processed well. I guess I just defined the point of therapy right there. Six different psychiatrists and a handful of therapists later, it feels like things are moving along.

It all started with talks about my dissociations (the aspect depersonalization especially where I feel like I’m out of my own body), why I dissociate (unintentionally but possibly with some purpose), which led to the discussion about the personalities I have possessed during different times in my life, which then led to the idea of there being a singular sense of self, or whether if I thought I had one. It was a difficult conversation, something that made me vulnerable and rather silly- I said I thought I had a very fluid sense of self. My favorite food, book, movie, color and anything that typically defines a person change for me every few hours, depending on how I feel and who I’m interacting with. I don’t like conflict, so I try to please most people by agreeing with their decisions and preferences within reason (sorry angry-human-in-orange-skin supporters). I think everyone does this to a certain extent (e.g. to look nice to your boss), but this is probably what I do to everyone. “Agreeable” would be putting it nicely, but you could also say that the person has no color to their personality. Could you say that I’m not normal? Perhaps. Is it healthy? Probably not. I could say it has been a survival mechanism since I landed on Canadian soil as an immigrant at the age of ten from the other side of the earth. I was unhappy with how my family was treated for not being able to speak English and not knowing the culture, and I promised myself that I would protect them and that I would be more than a second class citizen when I grew up. (For those who don’t speak a second language as their main language, people will treat you like shit if you don’t speak a language even if you have more degrees then them. Because, well, you’re basically dumb and mute for all they care.) From this point, I threw away my first language and immersed into my second to speak like a native. No mixing “l” and “r” sounds, knowing when things should be silent and not. In a neighborhood that did not share my culture, even with my efforts, I was not accepted well. I was a curiosity for a little while, but to make friends, I had to choose the new culture over my own.

Today I speak English like a native. Some would say better than a native. I achieved my goal, but I started doing something else. Giving up and compromising “myself” started being a habit since that day. I would make a mold of an idealized self and pour everything into becoming that person. Once I got there, the goal changed to something bigger and better. When the mold changed, and I would break the old one to become the new idealized version of what I wanted to be. As my therapist would say, I never let my real self grow, I just pretended to be the different people I wanted to be. I was making these molds and wearing them as my own personality. It took a lot of work, but I could do it. But all this time, I was the empty shell of a person underneath the plaster. Finally, the plaster cracked, as you know if you’ve been reading my blog. I graduated college with honors, got my dream job that I’ve been preparing for, had friends and a boyfriend, and interesting things to do, but I wasn’t happy. Furthermore, I felt like I wasn’t supposed to be there. I didn’t feel like I was good at things when I was praised and I didn’t feel like I was good at things when I didn’t get praised. Everyone was trying to fix me, into something acceptable, but they couldn’t put into words on a performance review. It’s hard to pretend to be confident about something when you feel that something is very wrong. In hindsight, I think that was my authentic self speaking out. I didn’t listen for a long time, because I was going after my goal.

Then as you know, hell broke loose. I became suicidal. I was hospitalized, then was soon diagnosed with major depressive disorder and anxiety, eating disorder not specified, then bipolar II. They are just words, these diagnoses. They, in summary, meant you’re doing something wrong with your body and mind. You’re doing you wrong.

My therapy is really taking shape: it’s about discovering who I am and living authentically, as cliche as that sounds. Twenty-four-years is a long enough time to live as someone else.

I’d love to hear your stories if you’ve been through something similar!

 

Buying furniture when you don’t feel like it

“You will be too much

for some people-

Those are not your people.”

-Source unknown

It’s (American) Thanksgiving today. I spent most of my functional portion of my day packing and begrudgingly buying furniture for my room online. I love furniture shopping on most days, but my mood was all over the place today. The really crappy thing about interior decorating when you’re in a mixed state (or if you’re just really indecisive) is you love one style (for me was modern industrial) and the next moment you’re drawn to something completely different (boho chic), so none of the furniture actually go together in a cohesive way. Maybe it’s better this way- it represents how I am, a paradox. A collection of things that coexist that probably shouldn’t.

So thanksgiving: I avoided thinking about today all day, because it’s a strong reminder of the friends who are no longer in my life, post-diagnosis. Friends basically used to be my family because I have very limited connection to the rest of my real family as the only child of an expat household. Good friends are like pillars for me, and a few of those came crumbling down after I my symptoms got worse and I was hospitalized. Partly it was my own doing because I hid my disorder from my coworkers out of shame, who were also part of group of friends. Thankfully not all of those pillars crumbled, and I found myself still standing. I realized that you need a different kind of person in your life with bipolar, if you can help it. You need someone who will be more hopeful for you when you can’t fathom still existing tomorrow. You need someone who will be there and believe your every word even it may in incomprehensible for them. You need kindness, patience and inner strength. I find that those are rare qualities we don’t often see in others because nowadays we as a society value competitiveness, efficiency and extravagance more than anything. Personally, I do still have a few friends who are these rare mythical creatures standing by me, and I couldn’t be luckier.

 

 

Bipolar and sense of identity

Often times when I don’t understand all the complexities of my brain chemistry, I (consciously and subconsciously) find myself blaming myself for everything being terrible, with little logic. Therapists often have pointed their fingers at various possible traumas for the causes, but I really had no big traumas in my life that I can think of, so I felt the responsibility of being sick fell on me. I felt guilty in a strange way, like serving a prison sentence for a crime that I did not want to commit, as I’ve heard someone describe.

I’ve been asking myself a lot of questions regarding why I had such a volatile sense of self in this last post, and got some lovely feeedback from you, which made me rethink what identity actually meant. I’ve studied “identity” from an anthropological perspective in college, but it turned out psychologists care about a different aspect of identity. Things like “schema.” At first I thought my unstable sense of self might have had to do with my history (living in so many cities/countries growing up, and not being close to family) but I didn’t consider my illness as a cause. With some quick Googling, I found a wonderful post by Elizabeth Brondolo, PhD called, “Who Am I? The Effects of Bipolar Disorder on Identity.” Here is an excerpt:

Some scientists think our identity reflects our underlying schemas. Schemas are mental structures that are comprised of thoughts, feelings, sensations, attitudes and memories that are linked together around a common theme.

Some of the schemas we have are related to our sense of self—our personal identity. These schemas are shaped by our life experiences, and they reflect our interpretation of these experiences. We can think of these schemas as our internal representations of our most important values and our deepest fears.

Schemas about our personal identity can be organized around themes of competence, acceptability, lovability, and strength, among other themes.  The thoughts, feelings, and memories we associate with each theme develop over time. They represent our observations of ourselves in action in the world and in relationships with others.

That’s schema as a general definition. Dr. Brondolo claims schemas have a different effect on us who are bipolar.

But developing bipolar illness can have a significant effect on the schemas we hold about ourselves. Bipolar disorder is a biological illness, but these biological disruptions affect our behavior and our mental processes. In turn, these changes can have a significant effect on our ability to function in the world and to relate to others. As we observe these changes and have new experiences as a result of bipolar disorder, we can develop a new set of schemas. For example:

– If the symptoms of bipolar disorder interfered with our ability to concentrate and plan and disrupted our ability to work or study, we may develop schemas about incompetence.

– If bipolar disorder drove us to behave in an unpredictable or unusual way (i.e., we were aggressive, impulsive, or hypersexual), we may develop schemas about our unacceptability.

– If we were rejected by others and lost relationships, we may develop schemas about being unlovable.

There is an example in the rest of her post about a woman in her twenties that almost is identical to my experience, but what I’ve bolded above was so validating for me. As a result of getting the illness, I wasn’t able to perform as I had before because of the symptoms. That made me feel more incompetent thus less worthy; I felt like a failure- even though that isn’t true sans illness. It makes me believe, and hope, if I can get stable again somehow and get back on my feet, I will maybe be able to feel differently about myself again through new experiences.

What does “recovery” even mean?

It’s been a really weird week this week. My depression hit an all time low but my family finished signing off the papers for a dream flat in the city. The general mood is celebratory but my depression is sticking out like a sore thumb. I feel bad that I’m dampening the mood, but my family knows me too well for me to successfully hide what is going on. The irony– family gets a new home, feels like dying. My dad asked me how I’m going to do my room, and I have no answer. I used to love interior decorating and remodeling homes and thought that my past self would have loved this opportunity. I just stood in my new empty room with two large french windows and immaculate wood paneling and thought, I’m not sure if I’m going to be here long. I remind myself that my thoughts are very distorted and negative.

Recently I’ve been catching myself asking this question: “is this as good as it gets? Maybe I’m expecting too much out of life with this condition”- which was something I would  never have questioned when I was healthy. I was a go getter and nothing was impossible for me if I gave my 110%, and maybe that was naive. But if I were to lower my expectations of what I can do with what I’ve got, what does that look like? What does this illusory “recovery” look like? What does the future hold? Of course, no one can know the future for sure, but there must be a way of finding out whether or not if there was a trajectory for people with this disorder.

I thought I was out of the woods once I got on the “correct” medication. My symptoms of depression disappeared like it was never there. This must be recovery! Alas, that was only for a while until I hit another massive depressive episode worse than the others I’ve experienced, and quite different. I moved across the country, which brought up a lot of stressors. The meds I took were not working and it almost seemed futile to be taking them so religiously. Because New York is a bit livier than Chicago, my anxiety spiked and I wasn’t able to get out of the dissociation. I felt like I was living on borrowed time, and that I was going to be gone any minute now from this planet that I did not belong. Things looked like it was getting better, but then I crashed again.

When does this cycle end? What does recovery even supposed to look like? A common definition is that there is a lack of symptoms of depression, mania and hypomania and that it doesn’t disrupt life. For me from where I stand that seems like a tall order, and maybe not so realistic. No symptoms? At all? How will this ever go away? Then the second question is, is it realistic to be able to control the symptoms or lessen them? So far for me, it has been hit or miss. I try to adhere to a healthy lifestyle, and it seems like there is a correlation, but most of the time, other external factors seem to smooth out all the work that has been done.

I would really like to live to live my life and not just live for the sake of being alive, even if it doesn’t mean returning to my old self before I got diagnosed. Is that asking too much?

Another move

Back on the mood roller coaster, everything is so terrible. There is no reason why, as depressive episodes go, but I feel guilt, embarrassment, shame all rolled up in one bitter package of self loathing. My reality is the total opposite. My family is moving to a lovely new place by the waterfront with a great view of Manhattan- it’s been a dream for us to actually move to this neighborhood and I should be thankful, instead I feel flat and sad.

I made some progress with my new therapist thinking about the disparity between my depressed self and my normal (and hypomanic) self. Why is that my self regard so deeply dependent on my mood? Most importantly, why is my self respect so low when I’m depressed? What is fueling this? When I’m depressed, to me, I’m less important than an ant. My existence feels like a waste of space. I feel like I have thoroughly failed to achieve the purpose of my being, which is to be a productive member of the society. When I was first hospitalized, I was shocked that the doctors and the nurses at the ER wanted to save me more than I wanted to save myself. When I’m hypomanic, or just plain normal, I feel confident, and feel deserving of happiness. This creates so much cognitive dissonance and an unstable sense of self. Truth becomes a shaky ground, and I become less trusting to myself. My judgments become implausible, which makes me less independent as a person. A fully grown adult should be able to make her own judgment about what to do, but I catch myself cowering because I simply don’t trust my thoughts and my judgements.

It’s becoming very hazy where the illness ends and I begin. How much of this is “actually” me, and how much of this is the illness speaking? I can feel my sense of identity eroding every single day. Not that I had a solid one to begin with. I’m scared that this move will bring me additional stress and push me further down the black hole where I feel nothing.

What a good day looks like for someone with biopolar disorder

Today is absolutely blissful- especially because this feeling is often short-lived and quite rare for me. I feel good about myself. Regardless of what I have achieved or not achieved, I like myself for who I am. And why shouldn’t I? Why shouldn’t anyone with bipolar not feel good about themselves? I can’t stop being thankful despite everything that’s happened, and all the help I’ve received along the way on my road to recovery. There are no intrusive thoughts or voices that plead me to disappear from the face of the earth. It’s not uncomfortable to laugh as it usually is for me during the depressive episodes, because it comes naturally. It makes me almost believe that humans are not inherently evil. It’s so quiet and calm, like my head is in a zen garden. Colors shine brighter and inanimate things appear more lively. Others tell me that the sallowness in my cheeks are gone, replaced by a peachy pink. There are sparkles in my eyes. My body temperature is higher. In fact, it’s even difficult how I could even have thought those things during my dissociation… I don’t understand how I could have been afraid to leave the apartment. I don’t see how anxiety could have prevented me from going to bed. I can’t imagine dissociating. I can’t imagine why the phone calls were so hard to make. It’s like someone planted that thought into my head, like in Inception, the film. In this state, I don’t understand how I could ever be depressed. I’m typing this so fast, because ideas are flooding into my head. Thoughts are racing. I can’t keep up.

It doesn’t surprise me that people who have bipolar disorder have one of the highest suicide rates out of the psychiatric disorders out there. If you can see how good life actually is, and see how good it could be, how else would you respond to the depressive episode that follows the mania/hypomania? It’s also difficult to be compassionate for your depressed self, because when you’re on the flip side, you can’t (readily) imagine how things could be so bad. It’s not impossible, but it’s hard- reading what I’ve written during the depressed and dissociated states, it all comes rushing back to me. About how it felt: how desperately I wanted out of my body, and how painful the persistent intrusive thoughts were. How I was scared out of my mind at strangers on the street, and scared that I was going to be attacked at any given moment. I felt unsafe for no logical reason.

As someone who is already not very in touch with her feelings, my cycling between hypomania and depression makes me distrust my feelings as a guide, even more. What is real? Is what I’m feeling too exaggerated for what’s happened in reality? Does it even make sense to evaluate your feelings like that? Is my depression making feel stronger than I should? Or during hypomania, could it be that I’m feeling too confident than I should? It’s possible that the reason why I ignored my feelings all these years was because my mood swings would have made it impossible to look “perfect” on the outside, and as a result I coped by squashing my emotions into a narrow range. Having perfectionist tendencies, I do tend to be obsessed with being “proper.”

I’m not doing much of anything today, but I’m happy. I know that when I wake up tomorrow, I may not feel this way again for a while, but I literally live for days like these.