Monthly Archives: September 2013

Things People with Mental Illness Should Stop Doing

Through a fibro blog I read, I came across 30 things to stop doing to yourself and its adaptation 16 things fibromyalgia sufferers need to stop doing. I am going to adapt this list for people with mental health conditions.

  1. Stop running from your problems. This one may seem obvious, but oftentimes, people with mental health problems go on and on until they crash. It is not like your mental health condition isn’t there if you run from it. We aren’t supposed to avoid all unhappiness and hurt. Rather, confront your problems and learn to accept them, adapt to them or solve them.
  2. Stop lying to yourself. Again, your mental illness or life challenge won’t disappear if you pretend it isn’t there. Like the author of the original list says, the first and hardest chance we can take in life is to be honest with ourselves. There is this idea in some forms of therapy, notably dialectical behavior therapy, that change and acceptance go hand in hand. In other words, you won’t change if you don’t face the truth.
  3. Stop putting your own needs on the back burnder. Having needs is human and normal. Everyone has a need for acceptance, safety, nurturing, etc. As mentally ill people, we often get taught that these needs are not normal because we may expresss them in unconventional ways. Stop thinking that just because you’re told that you do stuff “for attention”, it’s wrong to need attention. On a related note, stop thinking that taking good care of yourself is wrong.
  4. Stop trying to be someone you’re not. You may want to live without your mental illness, but that doesn’t mean you’ll become someone else in the process of recovery. Recovery is about becoming the best you you can be. It is a challenge to be yourself in a wolrd that reinforces conformity, but it is a challenge worth taking on.
  5. Stop holding onto the past. Trauma may’ve shaped your life and may’ve even caused your mental health problem, but you cannot change the past. I disagree with the origninal article’s statement that you shouldn’t be thinking much about your past, but don’t use it as an excuse to keep wishing for a new past. Work on processing feelings that come up in the present.
  6. Stop exclusively looking to others for happiness. You are responsible for your own life. While support people or professionals can help you, they will not solve your problems.
  7. Stop thinking you’re not ready. This thought will often become a self-fulfilling prophecy. No-one, including no currently mentally healthy person, feels 100% ready when they need to step outside of their comfort zone, but it take sstepping outside of your comfort zone to recover.
  8. Stop complaining and feeling sorry for yoruself. I disagree with Julie Ryan, the fibro blogger, saying that whining for five minutes without involving friends is okay, and the rest is not. In fact, it can help to whine to an understanding peer sometimes. Where I agree, is that it needs to stop.
  9. Stop wasitng time explaining yourself to others. As Julie says, most people won’t care enough to listen. Just assert yourself. If people are close to you, it may be helfpul to explain your mental health condition, but to people you casually meet, a simple “No” should be enough.
  10. Stop overlooking the beauty of small moments. It’s often in the little things that we find that glimpse of happiness. My classical culture teacher in high school once said that there is only one moment in your entire life that you can be happy, and that’s now.
  11. Stop acting like everythign is fine if it isn’t. No, you aren’t okay. You’re depressed, anxious, having dark thoughts or otherwise suffering. While you shouldn’t wallow in self-fity, as said before, you shoudln’t lie to yourself either. You may need to put up a smile for a bit when with people who won’t accept your mental illness, but among friends and especially with your mental health professional, it’s okay and even helpful to be sincere.
  12. Stop trying to be everything to everyone. Doing so is impossible, and trying will only burn you out (if it hasn’t alreaady). Try to take the chance to make small contributions to people’s lives instead.
  13. Stop worrying so much. It may be especially hard when you have a mental illnes, but cognitive therapy is effective for a reason: you can change your thought processes. Worrying will not strip tomorow of its burdens, as the original article says, but it will strip today of its joys.
  14. Stop focusng on what you don’t want to happen. Focus on what you do want to happen instead. This is going to foster an attitude of goal-setting rather than one of avoidance, and this will help you a long way along your recovery.
I didn’t include all of the original items. With some, like the commandment to stop spending time with the wrong people, I disagree (there are no wrong people). Others I did not feel were too applicable to mental health recovery. I probably could add some more items to this list, too, but for now I won’t.

Non-Disabled Standards and Afjustment to a Disability

When in counseling at the blindness rehab center in 2005, the psychologist, herself blind from birth, had me read her college thesis. I don’t remember its exact topic – it was soomething about adjustment to disability -, but I do remember her outlinign stages of becoming aware of nd adjusted to disability:

  1. Adhering to non-disabled standards while not feeling one’s disability is a handicap. This is the stage where a person is mostly unaware of their difference from non-disabled people. People with an acquired disability may not go through this stage – I am not sure whether the psychologist, herslef blind from birth, talked about this -, but congenitally disabled people do, for example, when they’re in special education surroudned by all disabled peers.
  2. Adhering to non-disabled standards while feeling one’s disability is a handicap. This is the stage of becomign aware of one’s difference, but not accepting it and assuming one shuld really be non-disabled.
  3. Putting non-disabled standards into perspective while feeling one’s disability is a handicap. This stage is somewhat of an intermediate stage between non-acceptance and adjustment. I think it can be seen as encompassing the reassessmet and reaffirmation stage and the coping stage in Tuttle’s model. While in this stage, the person acccepts the use of alternative techniques, for example, but still feels their disability makes them somewhat inferior.
  4. Putting non-disabled standards into perspective while not feeling one’s disability is a handicap. This involves self-acceptance as a person with a disability, with an awareness of the way in which one is different but while not seing this as making the person inferior.

I do not remember ever having been unaware of my disability, but my parents tell me that, as a preschooler, I was. I was quite a cheerful child back then. When I was still having the DID diagnosis, my parents assumed the trauma causing it was my having had to go into special education and hence becoming aware of my difference. This is somwhat contrary to my rehab psychologist’s experience, who shared in her thesis that she was mostly naive towards her difference when attending special education.

Stage two is where I was stuck for years or even decades. I was solidly stuck on this stage when I was in rehab. When my mental health conditions forced me to step back and put non-disbled standards into perspective I slowly slided into stage three, but with a twist of overcompensation. I became insistent on accommodations probably a little more than I could expect. I am still not sure whether my emphasis on my difference as a badge of honor, so to speak, is in itself unhealthy. I do think that its masking a sense of inferiority is.

What I am not sure about, is what putting non-disabled standards into perspective means. Can you overemphasize your difference and alienate yourself from non-disabled people? Or are disabled people naturally alienated from the non-disabled through the idea of non-disabled standards. After all, what I see in this stages model, is that the person with a disability is always seen as deviant rather than equal. They adjust to their disabiliy relative to non-disabled standards. Is this really as it should be? From a social model perspective, can we abandon this non-disabled standards paradigm and replace it with ahumand ignity paradigm? If we can, will this make adjustment easier? I will have to think on this.

The Many Losses of Blindness

There are many aspects of blindness a person losing their vision must adjust to. I just found an article describing twenty losses of blindness. These include:

  • Losses in the basic sense of psychological security.
  • Losses in basic skills, such as mobility or techniques of daily living.
  • Losses to communication, such as loss of social adequacy, ease of written and spoken communication.
  • Losses of appreciation, such as loss of physical integrity, visual perception of the pleasurable or beautiful, or loss of confidence in the remaining senses.
  • Losses concerning occupation and financial security.
  • Losses affecting the whole personality, such as loss of independence.

For me, losses in my basic sense of psychological security are common and not just blindness-related. I am not dealing with losses in basic skills at this point, and have never felt a loss in communication. Oh well, I have, but it was easy to adjust to.

Where I really struggle is with loss of appreciation. To be honest, I’d hoped to gain color perception back after surgery. This didn’t happen, and there is no way of compensating for the meaning of colors. After all, they can’t be touched, heard or otherwise non-visually perceived. Having always been quite a visual person, I still have a vivid but decreasing imagination of color, but this actually further reinforces the knowledge that I’ve lost the actual perception of it. I remember in 2004 going to blindness rehab and discussing with my fellow students what we would do if we gained sihgt. Most people said they’d read, travel or otherwise gain independence. I said I’d appreciate the beuaty of the sights around me.

As for losses to occupational or financial security, these have not really been related to blindness in my case. My parents say I would’ve gone into engineering or math if I’d been sighted, but this not at all interests me and never did after the age of around twelve. Whether vision loss contriubted to my loss of interest in math, I do not remember. I did consider career paths, such as in speech and language pathology, that are not suitable for a blind person, but I do not know whether I genuinely wanted to become a speech/language pathologist or just wanted to read up on it in university. What I did lose that somewhat relates to this, is recreation. I still miss not being able to draw, for example. Whether this is a loss of appreciation or a loss of occupation, I do not know.

Lastly, there is the loss of personal independence. I did lose independence skills when I lost vision up until my most recent vision loss ten years ago, but now my dependence is mostly related to my mental health conditions and autism. I have to think further on how this personal independence thing affects the whole personality, as is postulated. I think more is meant than just loss of practical independence, but I’m not sure.

Adjusting to Total Blindness

In his book Freedom for the Blind: The Secret Is Empowerment, James H. Omvig talks in the chapter on emotional adjustment about the importance of discussing blindness intensely and mentioning the word “blind” over and over again. This, according to Omvig, makes blindness part of a blind person’s everyday language and desentiszes the negative connotation of blindness.

I have been practising this desentisization for years, and it has helped me to adjust to my blindness. In 1999, when I transferred from special education into mainstreaming, I made a conscious decision to identify as blind from then on. After all, my tiny bit of residual vision was not going to be relevant amongst all fully sighted peers.

Still, I know that blind does not necessairly mean no visiion at all. In 2005 or 2006, I wrote my Dutch information page on blindness, and one of the FAQs I answered was whether all blind people are completley blind, and I answered it with a clear “No”.

As I’m facing the reality of the mostly failed cataract surgery, I wonder if I need to do a further desentisization, this time with the term “totally blind”. I have been doing this for a bit already since early this year, when I noticced my light perception had decresed to the ability to discern daylight from nighttime, but at the same time I was hoping it wouldn’t be necessary with surgery. Now my vision is back to probalby where it was around 2004 or 2005, with my being able to see room lighting, detect the position of windows, etc. I was writing this post, then midway through it left my darkened room and realized that my vision, while still technically being only light perception, had increased a bit from before surgery. Should I use this as an excuse not to desentisize myself to the idea of being totally blind?

I know that now that I’ve had cataract surgeyr, I’ve had my last chance of regaining sight. My intention with seeking an ophthalmologist’s opinion on surgery was more of a psychological nature than of a medical nature. Of course, I hoped for that hand motion vision the eye doctor said was the best possible outcome, but at the same time, I realized right from the start of this journey that a more likely outcome would be no improvement in vision. After all, before the cataract specialist had pretty much given me the choice, I’d expected him to flat out refuse to perform the surgery on me. Once I’d been put onto the waiting list, my hopes were somewhat up, but I still counted on a bad outcome.

Okay, I know this adjustment process has taken me over two decades, so can I technically expect to accept that I’m totally blind and will never regain my vision two days post-surgery? I’m not sure, but I’m actually tired of this adjustment process.

Stages of Adjustment to Blindness

Today on the Psych Central blog, I found an article on coping with chronic illness. According to Donna White, the author of the post, people who are facing a chronic illness go through the five stages of grief populated by Elisabeht K├╝bler-Ross as occurring in bereavement. These stages are denial, anger, bargaining, depression and acceptance. This post inspired me to pull out Dean Tuttle’s 1996 book Self-Esteem and Adjusting with Blindness. He describes not five but seven stages of adjustment:

  1. Physical or social trauma. This is a situation or circumstance the awareness of which brings about severe anxiety, discomfort and/or turmoil. In blind people, this may be the onset of blindness or vision loss (for those losing their sight later in life), becoming aware of one’s blindness (for the congenitally blind), or the knowledge of impending vision loss (for those who know they will lose their sight at some point before actual onset of blindness).
  2. Shock and denial. This involves mental numbing, including feelings of detachment or unreality, as well as the cognitions involving denial. Denial can be partial or full.
  3. Mourning and withdrawal. This stage happens when people become more aware of the reality of their situation and the psychological defense mechanism of denial decreases. Characteristics of mourning include self-pity and a sense of helplessness. People in this stage often withdraw from their physical or social environment. Hostility may also be part of the mourning phase.
  4. Succumbing and depression. This phase involves a gradual awareness of more specific consequences of vision loss. When these (real or perceived) consequences exceed a person’s ability to cope, they may fall into depression. The succumbing phase is characterized by negativism and pessimism.
  5. Reassessment and reaffirmation. This phase involves the re-evaluation of one’s situation. Anger, depression and self-pity begin to recede and people re-examine the meaning of their life, their values and beliefs and habitual patterns of behavior.
  6. Coping and mobilization. In this stage, individuals manage the demands of their social and physical environment and direct their energy towards the tasks of everyday life.
  7. Self-acceptance and self-esteem. Having a positive self-image is the last stage in adjustment. Accepting one’s blindness is a prerequisite for this. However, a positive self-image is far mroe than accepting blindness. It involves the realization that one is a valuable person. This means confronting one’s beliefs about oneself and one’s blindness, and challenging negative ideas about oneself.
I was unable to see where bargaining fits into the seven-stage model. Bargainign is where I believe I’ve been stuck for years, although I may confuse bargaining with partial denial.

In 2004 and 2005, when an online friend had sent me Tuttle’s book, I had done a series on my old blog on adjustment with my vision loss and actually the reality of finally having become totally blind. I guess in the next few weeks, I will revisit these posts. I realize I’m actually back where I was in 2004, realizing I’ve become totally blind and (now truly) there is no way this can be fixed.

Eye Surgery Was Yesterday

Yesterdy was my eye surgery. I got onto the unit half an hour early and was admitted over an hour late because the person before me required complex care. I would’ve been operated on at 10:00 AM but wasn’t until around noon. Technically, the operation was somewhat of a success and somewhat of a failure. The ophthalologist was able to remove the lens, but not implant an artificial lens. She told my husband that for color vision, which I was mostly hoping for, this would not make a difference.

Functionally, well, what can I say? I went to get checked up today and was able to see the flashlight on the first try and also see the blue light used for checking eye pressure. Prior to surgery, the optometrist had had to move the light closer two times before I could see it and I didn’t see the blue light. To be honest, I knew the blue light was blue; I could not actually see that this time either. The doctor checked whether I could see what direction the light came from (light projection) or whether I could see her hand move right in front of my eyes, but I could see neither. I had swelling on my cornea, so it could be once this clears up I will get some further improvement in vision. Overall though, I feel that functionally surgery mostly failed, and I reckon the cataract specialist would never have put me on the list had he known this tiny improvement would be all I got. I do hope once I’m all recovered, I can close this chapter and finally accept the fact that I will always be completely functionally blind.

Research Recommendations for Improving Treatment for People with Personality Disorders

Two studies in nursing journals that I read recently examine good practice for personality disorder treatment. Bowen (2013) specifically studied ideas for intervention with borderline personality disorder patients, whereas Fanaian, Lewis & Grenyer (2013) studied more general ideas for implementing personality disorder services. Bowen also emphasized direct intervention strategies, whereas Fanaian et al.’s study more focused on organizational structure. Bowen (2013) interviewed nine mental health professionals, four of whom were nurses, working at a specialist unit for patients with BPD. Key apsects of good practice mentioned by interviewees were:

  • Shared decison making: for example, service users and staff should meet in community meetings to discuss and think through decisions that a service user might otherwise make impulsively. This thinking thorugh also counters black-and-white thinking.
  • Rules should be actively recreated, rather than being strictly enforced or being abandoned. This is an offshoot from the shared decision making in the above bullet.
  • Patients should have social roles, such as jobs on the unit nd group therapy with a pratical focus. This is a way of bringing into the open and then challenging interpersonal difficulties that are so typical of BPD.
  • Social disturubances must not just be prevented, but also be used as an opportunity for learning.
  • Peer support, including feedback on behaviors, but also including compassion. One interviewee also commented that peer support can enhance the patients’ looking inward for the resources to help themselves, rather than viewing the staff as sole bearers of wisdom.
  • Open communication. For example, this unit had a structure whereby three service users were elected to discuss issues happening on the unit with the staff as a means of liaison.
  • Involvement with the person as a whole, seeing them as more than their BPD symptoms.
Bowen (2013) does highlight that not all of these aspects of good practice can be generalized. After all, this unit was a specialist unit for treating BPD and had its structure built so that these aspects of good practice could be met. For example, there were daily meetings, group therapy, and patients had jobs on the ward.

It was found that mental health workers on this unit had a pretty optimistic outlook on recovery from BPD. This is in contrast to research which shows that mental nurses have negative attitudes about BPD patients. Fanaian et al. (2013) emphasize this negative attitude towards people with personaltiy disorders as a major barrier to appropriate care.

Fanaian et al. (2013) had about 60 experienced clinicians in personality disorder treatment, including psychiatrists, psychologists, social workers, a nurse and a counselor sit in groups of four and brainstorm on topics relevant to personality disorder treamment. They overwhelmingly found that current practice in mainstream mental health settings is both poor and inaccurate. Ways to improve practice included:

  • More education and training on the subject. Some groups also recommended that workers in non-psychiatric settings who have frequent contact with personality disorered people, such as social services staff, be trained in personality disorders. Carers, such as family and friends, also were said to need education and training.
  • More support through supervision and leadership. For example, there should be more supportive and regular treatment team meetings. Clinicians also mentioned better access to Internet resources on treatmetn and assessment for mainstream mental health staff. There also should be greater support for staff approaching burn-out, as it was felt that staff working with personality disordered people have a high risk of burn-out and work-related stress.
  • A shift from risk management to recovery-focused treatment and case management. Acute hospitalization should be avoided when possible. Rather, patients with personality disordeers need intensive, multidiscipinary case management.
  • Clearer guidelines and protocols. Many groups of clinicians emphasized a consistent approach across teams, particularly when managing crises.
  • An attitude shift to decrease stigma. Some groups emphasized the fact that many health professionals have a negative attitude about personalityy disorder patietns, and this is a barrier to effective treatment.
Fanaian et al.’s (2013) study, like all studies, has its limitations. The clinicians participating in the study were invited to a personality disorders meeting based on expertise and experience. Therefore, it is not known whether these findings generalize well into mainstream mental health provision.

References

Bowen M (2013), Borderline Personality Disorder: Clinicians’ Accounts of Good Practice. Journal of Psychiatric and Mental Health nursing, 20(6):491-498. DOI: 10.1111/j.1365-2850.2012.01943.x

Fanaian M, Lewis KL, & Grenyer BFS (2013), Improving Services for People with Personality Disorders: Views of Experienced Clinicians. International Journal of Mental Health Nursing, 22(5):465-471. DOI: 10.1111/inm.12009.

Medication Treatment of ADHD Symptoms in Autistic Children

Autistics often have symptoms of ADHD. These symptoms are often treated with medication. About 15% of autistic children take psychostimulants or atomoxetine (Rosenberg et al, 2010). Stimulants are proven to be effective for ADHD in non-autistic children. Whether the same holds true for autistics, however, had not been systematically researched until now. Reichow, Volkmar & Bloch (2013) examined seven randomized, double=blind, placebo-controlled studies comparing methylphenidate, clonidine or atomoxetine to placebo in children with autism spectrum disorders and ADHD symptoms. Four trials were found for methylphenidate, two for atomoxetine and one for clonidine.

According to Reichow et al. (2013), methylphenidate was found to be effective for ADHD symptoms in autistic children. The effectiveness was slightly lower than it is for typically developing children with ADHD but still statistically significant. There was a greater risk of side effects in autistics, particularly for irritability, depression and withdrawal. The risk for common side effects such as insomnia and decreased appetite was similar to that found in typically developing children. One of the studies involved preschool children, and it was recommended by Reichow et al. after reviewing this study that methylphenidate-taking preschoolers with autis be closely monitored due to increased adverse events.

Clonidine and atomoxetine both showed moderate but not statistically significant effectiveness in autistic children (Reichow et al., 2013). These medications warrant further study, also given the fact that only one or two studies were found that met the inclusion criteria for a systematic review.

References

Reichow B, Volkmar FR, & Bloch MH (2013), Systematic Review and Meta-analysis of Pharmacological Treatment of the Symptoms of Attention-Deficit/Hyperactivity Disorder in Children with Pervasive Developmenetal Disorders. Journal of Autism and Developmental Disorders, 43(10):2435-2441. DOI: 10.1007/s10803-013-1793-z.

Rosenberg R, Mandell BS, Farmer JE, Law JK, Marvin AR, & Law PA (2010). Psychotropic Medication Use among Children with Autism Spectrum Disorders Enrolled in a National Registry, 2007-2008. Journal of Autism and Developmental Disorders, 40(3):342-351. DOI: 10.1007/s10803-009-0878-1.

BPD Subtypes

When searching for information on BPD, I came across a set of subtypes that describe the various features of BPD. These subtypes are:

  • Discouraged: this type of borderline is either avoidant, believing no-one will like them anyway, or overly dependent on others. They have an intense fear of abandonment. Borderlines of this type may also suffer from depressive symptoms.
  • Impulsive: this is the most hated BPD type among professionals. People who are primarily impulsive tend to act before thinkign. This includes violence or other antisocial behavior. Conversely, they may also engage in constant approval-seeking.
  • Petulent: borderlines of this type use passive-aggressive behavior, including emotional or physical self-abuse, to get their needs met by others. They have an intense fear of abandonment,, unstable self-image, and inability to express their needs properly.
  • Self-destructive: this includes depressive and self-harming tendencies. People of this type may not have many BPD traits other than self-injury and affective instability, so they may not technically meet the criteria of BPD.
Please note that people with BPD may have some features of one type and some of another. I, for one, have features of the discouraged and petulent types.

All types except for the petulent borderline operate in an abandoned child mode. Petulent borderlines operate in an angry child mode. I do see this point, but I want to stretch that the angry child usually masks the needs of the abandoned child, as my therapist explained. I myself cannot feel sadness unless I’ve first expressed intense anger or rage. Yesterday, I found myself in such a situation. I had had a minor conflict with my husband which led me to fear abandonment. As I got back to the ward, the nurses were assuming I’d had a good day – after all, it was my anniversary -, and were encouraging me to think positvely. Now I could and maybe will at one point write up a whole post on the positivity paradigm, but suffice it to say I snapped. I had a rage that, after a lot of back-and-forth screaming between me and the nurses, led to me running off and wandeirng around grounds screaming. I could only start to feel the sadness and fear of abandonment after I’d blown off some steam and calmed down again.

Eye Surgery

I’ve been legally blind all my life from a condition called retinopathy of prematurity. This condition is i itself not degenerative, but it often leads to retinal detachment due to scar tissue pulling on the retina. In addition, cataracts and glaucoma may develop. In 1993, I developed a cataract on my right (worse) eye. The cataract specialist felt it would be useless to operate on, so my own retina specialist removed the lens, but didn’t implant an artifical lens because I was either too young or she didn’t have the ability to perform this procedure. In around 1998, I lost what little vsion I had retained in that eye due to a retinal detachment.

In 2003 or 2004, I developed a cataract on my left eye. I went to an eye doctor for somethigng different (suspected glaucoma, which was then ruled out) in March of 2004. While we were there anway, my father asked the doctor whether cataract surgery would make any sense. The doctor was vague, saying if I thought I would regain some sight he might be willing to put me on the list, but he wouldn’t recommend it really. I was raised with the idea that I had to accept blindness and, from my last surgery in 1994 on, my parents treated me like I had no useable vision, so I decided I shouldn’t pursue surgery.

But the thought ate at me: what if surgery could restore some of my sight? In 2011 or 2012, I started discussing this with the nurses at my former institution, and they advised me to seek out a medical opinion. Earlier this year, I took up the courage and asked my GP to refer me to an eye doctor at the city’s university medical center. When there, the doctor proposed an ultrasound to look at the condition of my retina and optic nerve. He also requested my records from the hospital I’d been going to in the 1990s. Then he sent me on to the cataract specialist.

The cataract specialist said there was really no way of knowing what the actual functional outcome would be. Like, I had no retinal detachment on my left eye and my optic nerve was fine, but that didn’t mean I’d actually gain any sight back per se. I read up on some research and found that structural condition of the retina really does not say everything about visual function. The cataract specialist was willing to put me on the list for surgery, and I came in hoping to get surgery, so I consented to this. There is some risk that I’ll get bleeding or a retinal detachment due to surgery, but given that I only have a minimal bit of light perception now (being able to discern daylight from night time but not much else), I’m willing to risk this.

Surgery is next Monday. I’m kind of nervous. I guess I’d feel guilty if there were no improvement. Then again, I’d at least know that this was the last thing I could do for my sight then. I feel if there’s going to be no improement and I remain totally blind, I will be able to close this chapter sort of. The doctor had some hope that I would regain hand motion vision, which I had in the 1990s, but I am more pessimistic. If I will be able to see colors and very large objects, that would be absolutely great.