When you have had as many strokes as I have, you are constantly being surprised about what was damaged in the brain. You’re cruising along with everything being easy to do until suddenly you hit a brick wall and you simply can’t do the next behavior, no matter how hard you try. Well some of these brick walls are obscure and barely noticeable to anyone other than those who know you best. Then there are the walls that you didn’t even know you had but are noticeable to others. Welcome to part three of my series on the mental health aspects of living with Systemic Lupus and Antiphospholipid Syndrome.
I have something known as Pseudobulbar Affect disorder. It basically means my emotional states do not match up with the emotional tenor of a conversation or how I feel inside. I can be prone to laughing or smiling at random or in response to something that should bring about another emotional response. Alternately I can be found crying for no reason, though for me it’s often laughing in appropriately.
I had no idea I had anything wrong, but should have been suspicious when my boyfriend’s mother got all upset with me accusing me of laughing at her when she was talking about something serious. I was of course defensive because I would never laugh at someone in crisis. But then my boyfriend pointed out to me that I do either grimace inappropriately or smile at the wrong times. Complaints I never had to worry about prior to my strokes.
The good news is they have medication that treats it called Nudexta (one of a few on the market; this is the one I take). It’s not often when you are dealing with a chronic illness to have a medication that actually works 100% of the time. And to top it all off, it seems to diminish my depression and my body dysmorphic symptoms. Miracle drug!
What is important about PBA is that it suggests there is an often-neglected part of the brain that inhibits emotions at cellular level. It highlights that crucial taken-for-granted part of the brain that discerns what emotion should be deployed in the current situational context. PBA either effects the inhibition of emotions or the social perception of what emotions to apply to a given situation. In either case, it is difficult to diagnose because we are often quick to dismiss individuals who are incongruent with their social environments, designated as misfits, eccentrics, or un-insighful. Thinking that there may be a biochemical problem or brain injury is the last thought on people’s minds. But it is the first thought on my mind.
Today my PBA is a managed by a rust-colored capsule I take twice a day. I wouldn’t change this for the world. It keeps me in sync with the outside world around me. I no longer telegraph a sense of disconnect between me and the world around me.
Tuesday, September 25, 2018
Thursday, September 6, 2018
Lost in the Mirror
This is part two of my three-part blog series on mental health, mine in particular. I struggle with severe anxiety that largely revolves around social situations. One specific aspect of my anxiety stems from what is known as Body Dysmorphic Disorder, a related disorder to Obsessive-Compulsive disorder.
My experience with BDD has been lifelong dating back to earliest childhood, where I would spend hours in front of mirrors and self-conscious of my body determining all the things that were wrong. And much of it is laughable when I put it down on paper, for example, I used to think my nose was not snub enough and my skull was too flat in the back, my hair too thin on my head and too much on my face, breasts were too large (I had plastic surgery at the age of 18 to change this), my feet were too blocky, one eye drooped more than the other, and I had a hump on my back. All of these things I would obsess on and be certain everyone noticed and judged me for. It was so bad as a child and young adult that I would spend hours in front of the mirror, avoid going places, and eventually turned down a promising career in the theater. All because the person I saw in the mirror was hideously ugly and everyone must notice it too and think poorly of me.
Where did all of this come from that at five I was already showing signs of the disorder? A lot has to do with my relationship with my mother. Who I will say did a generally great job raising me but for this one area. My mother, too, is obsessed with her perceived flaws and began when I was very little telling me what was wrong with me. My feet were not as tiny as hers (I wear a 7.5 shoe so my feet actually aren’t huge, but they weren’t her delicate 5 shoe size). My hair was a tangled, thin mess, not thick like hers. I was “too busty” and “top-heavy” and my back was curving. I had a Roman nose “roaming all over my face”, my “father’s nose” (it’s actually just a normal nose). And I was never thin enough. When I had my breast reduction at 18 (which I regret), my mother said to me “now you look the way you were supposed to look”. Anyway, you get my drift. My mother was preoccupied with how I looked and I subsequently developed the same drive to pick myself apart.
These days BDD is still a part of my life, impacted by the bodily changes of illness, aging, and weight-gain associated with medications I take for Lupus, Gastroparesis, and depression. However, I no longer stand in front of mirrors—I avoid them instead…like they are the plague. This avoidance keeps much of the negative narrative under wraps. Yet, I still am socially phobic. I’ve developed a very comfortable life in relative solitude with just a handful of friends I see occasionally and my spouse. I still avoid large social landscapes like malls, clothing stores, and other stores due to the anxiety that invades telling me I will be stared at and judged as flawed and ugly. I find myself envious of women who are confident being overweight and want to be more like them rather than how I am. When I step back I often think that the mental energy I invest in lacerating myself because of how I think I look is ludicrous and a waste of my time, but that rational thought is not powerful enough to alter the way I think.
What was a striking miracle in my BDD journey was being put on Nudexta for a stroke outcome known as pseudobulbar (more on that in the next post). While not approved for BDD, I noticed an almost immediate benefit in calming down the obsessive thinking and compulsive behavior that subsequently emerges to calm the thoughts. So I owe my strokes a small bit of thanks.
Individuals with body dysmorphic disorder [BDD] are preoccupied with one or more perceived defects or flaws in their physical appearance, which they believe look ugly, unattractive, abnormal, or deformed. The perceived flaws are not observable or appear slight to other individuals. Concerns range from looking “unattractive” or “not right” to looking “hideous” or “like a monster.” Preoccupations can focus on one or many body areas, most commonly the skin, hair, nose. However, any body area can be the focus of concern. Some individuals are concerned about perceived asymmetry of body areas. The preoccupations are intrusive, unwanted, time-consuming (occurring, on average, 3-8 hours per day), and usually difficult to resist or control. (Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, p. 243).
My experience with BDD has been lifelong dating back to earliest childhood, where I would spend hours in front of mirrors and self-conscious of my body determining all the things that were wrong. And much of it is laughable when I put it down on paper, for example, I used to think my nose was not snub enough and my skull was too flat in the back, my hair too thin on my head and too much on my face, breasts were too large (I had plastic surgery at the age of 18 to change this), my feet were too blocky, one eye drooped more than the other, and I had a hump on my back. All of these things I would obsess on and be certain everyone noticed and judged me for. It was so bad as a child and young adult that I would spend hours in front of the mirror, avoid going places, and eventually turned down a promising career in the theater. All because the person I saw in the mirror was hideously ugly and everyone must notice it too and think poorly of me.
Where did all of this come from that at five I was already showing signs of the disorder? A lot has to do with my relationship with my mother. Who I will say did a generally great job raising me but for this one area. My mother, too, is obsessed with her perceived flaws and began when I was very little telling me what was wrong with me. My feet were not as tiny as hers (I wear a 7.5 shoe so my feet actually aren’t huge, but they weren’t her delicate 5 shoe size). My hair was a tangled, thin mess, not thick like hers. I was “too busty” and “top-heavy” and my back was curving. I had a Roman nose “roaming all over my face”, my “father’s nose” (it’s actually just a normal nose). And I was never thin enough. When I had my breast reduction at 18 (which I regret), my mother said to me “now you look the way you were supposed to look”. Anyway, you get my drift. My mother was preoccupied with how I looked and I subsequently developed the same drive to pick myself apart.
These days BDD is still a part of my life, impacted by the bodily changes of illness, aging, and weight-gain associated with medications I take for Lupus, Gastroparesis, and depression. However, I no longer stand in front of mirrors—I avoid them instead…like they are the plague. This avoidance keeps much of the negative narrative under wraps. Yet, I still am socially phobic. I’ve developed a very comfortable life in relative solitude with just a handful of friends I see occasionally and my spouse. I still avoid large social landscapes like malls, clothing stores, and other stores due to the anxiety that invades telling me I will be stared at and judged as flawed and ugly. I find myself envious of women who are confident being overweight and want to be more like them rather than how I am. When I step back I often think that the mental energy I invest in lacerating myself because of how I think I look is ludicrous and a waste of my time, but that rational thought is not powerful enough to alter the way I think.
What was a striking miracle in my BDD journey was being put on Nudexta for a stroke outcome known as pseudobulbar (more on that in the next post). While not approved for BDD, I noticed an almost immediate benefit in calming down the obsessive thinking and compulsive behavior that subsequently emerges to calm the thoughts. So I owe my strokes a small bit of thanks.
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