(Excerpt. This accompanied a detailed and complete personal history)
I. DESCRIBE YOUR DISABILITY
In this new reality, here is what I experience. I feel I have always experienced most of these things, but have been influenced to deny or hide them in order to “stay focused on the positive” or “be strong” or live up to the expectations of others, or impress, achieve, achieve, achieve. I am so smart and talented. How could anything ever be wrong with me?
emptiness, isolation, defectiveness and shame
I grew up with incredible emptiness, estrangement, alienation and isolation within my own family unit because I was born as a creative and sensitive person to parents who lacked this in themselves and did not understand how to relate, reflect, attune to, or value it in me. This created a sense of being different, somehow flawed, defective; that there was something wrong with me and that I was unable to perceive reality because what I perceived was so foreign to my immediate family. This is the basis of the split in me, the basis of compulsive perfectionism and its inextricable association with love and validation.
This aspect was traumatically compounded by the experience of abuse, separation from my peers and the subsequent denial of my parents, school and the law that it even happened.
dissociation – unaware of emotional reactions taking place that are disrupting self-care. feeling that I am not real. feeling like I am in a bubble and nothing I do can pop it. I am trapped. Reality gets small, sounds become muted. It is like a silent panic. I’ve been aware of this feeling lurking in me like an octopus under my bed since I first moved out on my own at the age of 15. The escape of this sensation has perhaps been one of the greatest motivators in my life. The escape of what I’ll call ‘emptiness oblivian’ (the octopus). No matter how much work I do on myself, he is always there.
grandiosity as overcompensation / damning ability to fake-it
In hindsight, I grew up thinking that not only did I have to hide my shame and unworthiness, but on top of that, I had to live up to everyone’s description of me as smart, beautiful, intelligent, special, talented, gifted. I had to be an exceptional human being to gain any sense of approval.
It is this gross sense of overcompensation that led to the chasm between mind and heart growing wider and wider in me the more I achieved. The higher I climbed, the more precarious I became and the farther I had to fall. It was like having my feet on two different boats that kept moving farther and farther apart until I could not hold on any longer. There is no stable foundation behind my successes, and people eventually see through that. It has been my compulsive saboteur. Compulsive because I have found the need to impress is chronic, overwhelming and uncontrollable.
unstable sense of self
I feel the root of my illness is the split between my mind and heart, which causes an abnormal range in me on the scale of confidence. I go from being able to present myself confidently with warmth, humor, intelligence and leadership to the extremes of social phobia, indecisiveness, insecurity, isolation and hopelessnesss. I have a regression into the later usually at least once every week during more stable times. It makes a fool out of me. Makes it hard to trust myself, know how to present myself. This range of confidence is a significant core aspect of my illness. Sometimes, I can shift quite suddenly, within seconds, which is extremely alarming and scary and which I call an episode because it takes me days to recover from. This is extremely disruptive to my ability to form lasting and meaningful social connections.
unstable or non-existent relationships
I have difficulty maintaining social connections and community involvement and frequently feel disconnected, somehow at odds with the flow of things. People cannot imagine that someone who seems so competent and confident could also be at an emotional / psychological / social / economic disadvantage. And, because I compulsively and expertly hide the darker end of my experience, it’s easy for people to disbelieve that it exists. It’s even easy for me to forget how it feels until I am back in it. When I try to let it show, or ask for support around it, people misunderstand me and say that I am faking it for attention. For the most part, the most that people can see or understand of my instability is a shyness and awkwardness that seems out of character. A childlike quality where once there was a leader, someone with professional knowledge and expertise to offer. A shy person where once there was a ‘life-of-the-party.’ A person who doesn’t show up for things, who once seemed so gung-ho and like such a positive addition to any event. They are not sure how to take me — do they look up to me or bring on the extra compassion and support for me? Few of them I’m sure realize how much I share in their confusion. Since they sense that there is more to me beneath my surface that I am not showing to them, they are not sure if they can trust me. They do not engage in the relationship; it’s not a conscious decision, but rather like an inadvertent, unconscious rejection. I am an expert at first impressions and I can charm like a pro, but as the relationship progresses, there is nothing solid for them to attach to, so no attachment is formed.
Perfectionism is compulsive and becomes obsessive in me around every corner. Because during my childhood, achievement was the only way to experience acceptance, contact and validation, perfectionism is a fight-or-flight response in me. If I am not perfect, I am not loved. All parts of every project must be completed to the very best of my ability. Perfectionism gets in the way of effective prioritization, energy and time management. I find it exceedingly difficult to leave something unfinished, and end up spending hours and hours on end on a project or a relationship process without eating or sleeping properly or looking after other daily living responsibilities such as social contact, self-care and personal life management.
I define compulsive as being uncontrollable repetition. For me, it is almost directly connected to perfectionism, as well as escape. I work compulsively to achieve perfection. I play a computer game, surf the web, or take on things to do to busy myself, or am chronically late compulsively in order to escape what I am feeling because it is too intense for me to handle or even be aware of. I can be compulsive to the point of forgetting a menial task I said I would do just moments before, or something I have put on the stove to heat; calling people or completing other practical chores pertaining to finances, transportation and self-care including personal hygene, grocery shopping and food preparation.
I am most impulsive when it comes to my communications with others. Once I have established a positive first impression, I often lack appropriate boundaries, and communicate impulsively on a personal level that is inappropriate in most situations in general society, which makes it difficult for me to establish social networks, community and a sense of belonging.
Mania can occur occasionally when there is a surplus of opportunity in my life, whether social or professional. I lack the ability to regulate my activities, and am so highly responsive to external influences that I can lose touch with the importance of self-care and time management completely, forget that I am disabled in terms of energy, stimuli and dysregulation and embark on an episode of manic socializing or working activity that inevitably leaves me exhausted for several weeks. A sign of this state is extreme forgetfulness – appointments, losing keys, wallet, etc.—as well as heightened speech and an abrupt, impatient response to anyone who might try to point out that I am not in a grounded place or making sound decisions, though this aspect will only be visible around very close friends or family members. I am outrageously reckless with my time, energy, safety and self-care.
over-sensitivity to stimulation
High-stimuli environments such as social gatherings, night clubs, cities, grocery stores or shopping malls will over-stimulate me within an hour, which also leads to fatigue. Often, I will experience a complete shut down of my energy and personality that is sudden, uncontrollable and scary. Immediate removal from the situation is required to avoid an emotional melt-down or damage to my social relationships.
I become fatigued with 2-4 hours of any activity outside of my home and/or involving one or more other people. Strenuous physical exertion for an hour can result in extreme exhaustion and bed rest for days afterwards.
This runs in the maternal side of my family for 3 generations back. I use sleeping pills and melatonin to sleep, with inconsistent success. The night time is when no one expects anything of me. My creativity, intelligence and insight peak during the hours of 11pm and 3am; it has been this way since I was a teenager. I have tried very, very hard to curb this, and each time have ended up very sick, depleted and emotionally fragile from lack of sleep. fitting into the norm of the 9 – 5 work world is an impossibility for me.
It’s impossible for me to follow a routine for more than a few weeks or a few months at most, such as eating, sleeping, working, or exercising at regular times. It’s not because I am lazy. It’s because my emotions and moods are so intense I cannot deny them.
One trigger can tow the whole ship down for days or weeks. A trigger can be a memory, a particular personality who intimidates me or reminds me of someone else in my past; too much time alone, holidays, a work situation with unclear parameters, living alone, as I have mentioned, and large groups of people in social situations. A trigger can last for days, causing lack of sleep, depression, impulsivity, compulsive escape and a lack of ability to care for myself on the basic levels of food, sleep, exercise and hygene. With several triggers at once, or a prolonged state of trigger, I can enter a crisis state of dissociation, severe emptiness and panic that lead me to become suicidal, sometimes within hours. No one would know; I would simply disappear for several days until I came out of it naturally, actually went through with ending my life, or reached out for the appropriate professional support.
Creativity can also be the cause of dysregulation. I have revelations or creative ideas that I have to act on immediately. If I don’t I will forget about them the next day. I have tried various techniques of jotting down just a quick note to jog my memory, but I lack the self-control to stop there.
I have exercised great and extreme discipline and repression in my life, and I do not feel that a lack there of causes my dysregulation.
abnormal amount of time for necessary emotional processing
Where there is emotional or sensory stimuli, I require hours and often days of pre-occupation in order to process the emotional effect on me of the stimuli or any emotional trigger. Often there is a delayed response to a trigger or stimuli, where it can take me hours or days to even realize that I have been triggered or affected. Quiet time to myself to write, rest, read, research or connect with others in the recovery community is needed to stay aware of how I am feeling and cultivate a healthy rather than destructive response of self-care and healthy boundaries.
easily overwhelmed / stressed
Add bureaucratic tasks associated with every day life, such as library items due, banking administration, budgeting, tax filing, etc. or even just a surge in small errands or tasks to complete, and I experience anxiety, lack of self-care, isolation, compulsivity and impulsivity and sleep disturbance. I also become highly sensitive to emotional stimuli and social paranoia in these times.
I’m not sure where the line is between extreme insecurity and social paranoia. I identify with paranoia in the context of insecurity, when it feels like I have said or done things that have made others uncomfortable around me, or that others are distancing themselves from me because they have seen my instability, seen through my disguise of competence and confidence. They are talking behind my back, and my reputation may be irreparably damaged because I let a feeling slip out when I shouldn’t have; I was inappropriately honest, or communicated in a complicated way, or I am complicating the issue and making things difficult for myself and others and no one wants me around any more.
anger turned inwards
It is a common theory in psychology that depression is simply anger turned inwards. Internalized Borderline Personality Disorder can be seen as the Hollywood borderline turned inwards. Instead of lashing out in anger and rage, which would make it far more obvious that I am mentally ill, I lash inwards in private. I do not remember feeling the emotion of anger until my late teens. The extreme isolation I experience in my life could be said to be the result of no one knowing — and sometimes least of all me — how I am really feeling inside. The lashing in can manifest itself in reclusive and avoidant behaviour, breakdown of self-care, or other self-sabotaging behaviours.
lack of hygene
I require emotional support and the presence of a supportive other in my home in order to eat regularly, sleep anywhere near properly, perform personal hygene and exercise regimes, and generally function to any degree in society. I am capable of doing these things as long as I am not living alone and / or experiencing an emotional trigger of isolation, rejection, or invalidation. What I have not been able to do is find energy, and withstand the amount of stimuli it requires of me, to incorporate grocery shopping, dishwashing and house cleaning into my life on any kind of regular basis. Finding the energy to work, process my experiences, take care of myself and my living space, and maintain social and support networks to the degree of the status quo is completely overwhelming to me, and this feels like a permanent reality.
II. HOW DOES YOUR DISABILITY AFFECT YOUR LIFE AND YOUR ABILITY TO TAKE CARE OF YOURSELF
My disability means that I require extra validation and support, constant presence of other people, and lots of time and space to process and digest my feelings and experiences. I need a high level of intimacy and honesty in all my relationships, an inordinate amount of time and support to process emotions, and cannot sustain myself alone. Having the right contacts and balance of stimuli is precarious at best, and a matter of life and death.
I require a slower pace, as well as understanding and support from family and community members, and a very flexible and delicate balance of scheduled and unscheduled activities.
I feel there is a split between my brain and my heart. I can articulate and understand all these things, but no amount of understanding seems to change my experience of life, which seems to be an endless string of new beginnings and horrible falling outs that cause me to have to leave a place and never look back, try to forget it, forget the path of shame and humiliation I have made. Start again. Maybe this time it will be different.
The only way I can continue to survive is to accept this reality, and allow myself to receive support around it. I can likely never live alone again. The mere imagination of living alone causes me to begin to dissociate.
It is difficult for me to be steady and consistent with social events and contacts. Sometimes I have to miss important community or social events because I am exhausted or feeling insecure. I can go from inflated confidence, warmth and ease, being the ‘life of the party,’ to awkward shyness and desperate reclusiveness in a matter of minutes. Making friends and maintaining community contacts is a challenging and precarious process. I will likely remain dependent on the therapeutic and recovery community for consistent and stable social contact and emotional support for the rest of my life.