Tag Archives: Control

Fear of Demands

I admit it, I have a fear of demands. I originally wrote that I have a fear of independence. In fact, I thought for a while that I may have dependent personality disorder. People with DPD have a pathological need to be taken care of. They can’t make everyday decisions without a lot of counsel, need others to take full responsibility for the bigger decisions in their life, and may even stay in abusive relationships out of fear of losing someone to take care of them. They appear incredibly easy on therapists at first, agreeing with their every counsel. On a deper level though, this is just a way of maintaining the care relationship.

I still believe I have some traits of DPD, but this last bit is where I realized dependence may not be the core of things. I am not easy on a therapist at all. In fact, I remember being seen as very defiant when I was on a locked unit in 2007 and 2008.

I do have a fear of practical independence, I admit. Then again, it’s more a fear of other people taking contorl over what I can and can’t do practically. I’d love in fact to have full control over deciding what I can and can’t do independently. My fear is not of doing things independently myself, but of other people deciding I can do them independently.

This is where pathological demand avoidance enters the picture. PDA is a conditon along the autism spectrum in which people have a persistent anxiety of direct demands placed on them. They often appear defiant, but underneath this is a deep fear. It could be fear of failure in some ways, but it’s more.

There is an interesting aspect to my fear of doing things independently, and that’s that I can do them fine when no-one’s watching me. Also, when I take the initiative to do things independently I can do them much better than when others tell me to do them. I remember E-mailing around for a therapist to treat my dissociation in 2012 and I had no problem doing it. (I stll had anxiety about it, of course, but that’s more fear of the response.) I called the social consultant and client advocacy organization last week and was fine. On the other hand, when someone asks me to make a phone call or E-mal someone, it’s much harder for me. I also took the initiative to go live with my husband. Then, when my staff took away my control over it and demanded I show certain capabilities if I wanted to live with him, I backed away.

Unfortunately, the care system is built on the premise that psychiatric patients just need a little pushing to do things independently. Despite the rehabilitation and recovery models, which I applaud, people are only allowed to take control if they’ve shown their competence first. I cannot do this. It scares the crap out of me. I want recovery without having to prove myself. Hopefully, I’ll be able to accomplish this when I live with my husband.

Linking up with Finish the Sentence Friday. A little late, i know. The prompt sentence was: “One of the biggest fears that I’ve ever had to face…”.

C – #AtoZChallenge on Mental Health

Welcome to the #AtoZChallenge on mental health, letter C. Today, I have quite a few words to discuss with you.

Care Plan

When I first entered the world of care, I didn’t have a care plan. They were just starting this up at the blindness rehabilitation center and I was among the last who didn’t have one. I hated it, because I thought a care plan meant I’d actually get better care. That’s the idea. It doesn’t work that way in real care.

Care plans in mental health are part of treatment plans but not the same. They list the patient’s goals for a particular time period, the help a patient will get and the risks if the patient doesn’t get that help. Care plans are framed in a very rigid format. As such, they cannot accommodate all the varied problem areas a mental patient might experience. The care plan also needs to conform to one’s care package, which is the amount of funding allocated to a patient’s care. Then again, care plans are also used to justify funding. If this isn’t a circular argument, I don’t know what is.

Caseload

A treatment or care provider’s caseload is the number of patients assigned to them. In intensive outpatinet care, one professional might have a caseload of ten patients. Usually, their caseload is much larger. Caseloads are related to how much care a person is allocated again. For instance, as a person in my care package category, I’m only allocated 50 minutes of “treatment” a week. This includes psychotherapy or counseling, social work, medication management, etc.

Comorbidity

This is the co-existence of two or more mental illnesses in one person. Many people in long-term psychiatric care have more than one diagnosis. Interestingly, a “dual diagnosis” refers specifically to a mental illness and an addiction co-existing.

Control

I once read a list of things typical to institution life, and at the end, the list went: control, control, control. Even though the philosophy of mental institutions has changed over the past several decades to “allow” patients more independence and to rehabilitate us, this has become its own framework of control. I have had many battles with nurses who said that, because this is a treatment unit, I should be able to do daily activities independently, despite the fact that I can’t do most of these.

Out of My Head, Out of My Reach

I have been feeling a lack of motivation for blogging lately, especially in English. I blame, in part, the restart (again) of my Dutch blog, but I also blame the fact that just too much is going on in my mind that I don’t know how to put into words on paper (or on the computer screen, of course). Today, I got myself yet a couple more journaling guides, and one of them is 53 Weekly Writing Retreats by Mari L. McCarthy. I subscribe to her newsletter and have been thinking of joining one of her journaling courses, but I never followed through.

The first journaling exercise in this 53 weekly retreats thingy is called “Goin’ Outta My Head”. It asks you to write what’s on your mind. This may not exactly turn into a blog post that’s going to go viral (not that any of my blog posts will ever go viral, ha), but I don’t care. Here goes.

I’m having huge difficulty imagining I’ll ever be ready for life with my husband. My husband wants me to practise coming to our home on a MOnday or Friday (so after or before the week-end we’ll spend together) to practise time alone where I can’t reach out for support. He wants me to use my limited accessible long-distance transportation for this. The tiny village is not in the same short-distance transportation area as the institution, so I can’t use the virtually unlimited regional accessible transportation service. Not that I have a regional accessible transportation pass yet. Anyway, it sounds logical that I’d use my limited transportation for rehabilitation rather than socialization. Or not. I am supposed to visit a friend at the other end of the country on Thursday, but the bidirectional journey costs me about half my allocated transportation kilometers. I’ve now setteld on going part-way by accessible transportation and part-way by train, thanks to a great service that allows consumers to combine accessible transportation with guided public transportation.

However, I’m completely overwhelmed by the whole idea of having to live with my husband in four months. He works full-time. We live in a tiny village where the nearest support agency is almost 20km away. We don’t have a clue whether I can get on-call support at all. We don’t even have a clue where to ask these things, and yet, because we moved out of area, social work isn’t going to help us. And because it might slow down my rehabilitation process, the professionals in control won’t let me go to an institution that is within our area.

I like our new house far better than the old one and, besides, it’s where my husband feels at home. I have never had a place where I felt at home at all, and I don’t want to make my husband feel out of place. The care in our old town isn’t great either. Besides, there’s just no going back. I agreed to move to the tiny village and we’ll have to deal with it.

However, because the powers-that-be take no responsibility for getting me proper care but are refusing to let me go to an institution that will, I feel like all responsibility rests upon my shoulders but I have zero control. I got this whole ball rolling with my comment, over a year ago, that I want to go live with my husband, yet now the ball is completely out of my reach.

He Is Trustworthy

Yesterday, I talked to Shannon from Chosen Families. Shannon is the mother of a disabled child and her site aims to be a ministry to special needs families. Her most recent post is titled He Is Reliable. In this post, Shannon reflects on John 8:26, which in the Bible version she uses reads in part “he is reliable”. In the NIV, it reads “he is trustworthy”, which speaks to me in a similar way.

He is trustworthy. Why do I struggle with this idea? Shannon names just a few circumstances which special needs families can be faced with, and I have faced many of them myself. Yet He is trustworthy. I have a hard time trusting God, because, after all, why did He put me through what I’ve been throguh if He is trustworthy?

“Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.” (Proverbs 3:5-6 NIV)

This. I searched for “trust” on Bible Gateway and this was the first suggested result. “Lean not on your own understanding.” This. Why would I be able to judge God’s reliability if I do not understand His ways? Skeptics could say that God exists to serve man, but according to the Bible, this isn’t so. Would He, therefore, serve me by putting me through what I’ve been through? Maybe, indirectly, but maybe not. Maybe my experiences serve some entirely different purpose, which I may not be able t understand.

It is tempting to think that as humans, we can control our own life experiences. If we do good, Karma or some Christian variation of it will give us happiness. This isn’t so. Of course, we have free will too and therefore have some level of control over our lives, but ultimately, part of what we will endure is in God’s hands. “In all your ways submit to him, and he will make your paths straight.” He is trustworthy, after all.

When I Shouldn’t Reach for My Meds (But I Do)

Today, I had a discussion with my psychiatrist. I’ve been feeling okay overall, but, when my therapist and social worker got talking to me about going into supported housing, it caused me to be irritable for days. I notice this a lot lately: when I’m able to stay in the present and just do my thing, I’ll still have some mood swings, but they aren’t nearly as severe as when I need to focus on the future. My therapist and I are clearly not on the same page in terms of my goals, and this causes me intense frustration. I’ve reached for my PRN medication almost everyday last week, even though it isn’t effective. At least the though that something would be numbing me and I had some control over my emotions was there.

My psychiatrist pretty much said that situational frustration is not a reason to reach for meds, and he’s right. That’s one of the main reasons I stopped my Risperdal, which had been used to make me just numb enough not to have a crisis while living independently, but not so numb that I didn’t feel the intense pain anymore. In a way, I want nothing to do with my increased dose of Abilify either. It wasn’t increased now, but it’s been increased twice since I came here seven months ago, while I’d been stable at a moderate dose for three years before I cam here. Medication isn’t a cure for shitty circumstances.

Yet I reach for medication everytime I feel frustrated. It’s probably what I’ve been learning to do. I can’t get more support if my therapist doesn’t want me to get it, and it’s still a fact that in psychiatric institutions, patients have little say in their treatment, unless their treatment goals are in line with the latest treatment philosophy. Back when patients had to be locked up for the rest of their lives, people wanting to move into the community, were medicated, secluded and otherwise forced into submission. Now that psychiatric services have to face budget cuts and their philosophy has changed to rehabilition, patients like me, who cannot cope with this pressure, are, albeit more subtly, still forced into submission. Still, the only way to numb the agitation that I feel at people trying to control my life, is to reach for my meds. It isn’t going to get me out of this vicious cycle, but then again, what is?

Effects of Institutional Abuse

A few days ago I was stumbling across blogs as I found Kim Saeed’s post on narcissistic abuse and the prison camp effect. I have never been in a relationship with a narcissist, but for some reason, I could relate to its effects. Then today I came across a post on confusion and forgiveness in emotional abuse. Some points in this post struck a chord with me. I often am convinced that I’m the one doing something wrong in every case of disagreement. This is common in abuse survivors in relation to their abuser, but I do it in any case where there is a perceived power dynamic, and I see power dynamics everywhere. Even with supportive people like my husband, I find myself second-guessing myself.

My therapist has said that I have likely been in a situation where other people controlled my life all along. This was not intended by the individuals who did this and isn’t necessairly bad. Children need some level of direction from their parents, for example. Where it gets problematic is where the child or adult becomes more controlled by parents, carers, staff or other authrotiy figures than is healthy for them. I am using the standard of the controlled person’s health here rather than society’s norms, because society allows for and even condones a lot of harmful power dynamics. Prison camps for example. What I mean is, being controlled in a way that is socially accepted can still be harmful and may have the same effects as narcissistic abuse.

One factor that makes institutional abuse, like prison camps of psychiatric abuse, more complicated than abuse by an individual, is however that the individual is not solely to blame. For example, psychiatric patients are commonly subjected to solitary confinement and forced treatment. This is institutional abuse. It involves a generally accepted power dynamic. The nurse who secluded me or the countless nurses who threatened it were not narcissists (although I have my doubts about the doctor who shove the seclusion plan down my throat without consent). They were simply doing their job, and their job was to control even if it’s for goodness’ sake.