Saturday, November 3, 2007

Correcting the Misperceptions

I got a personal e-mail saying "I work for a living and my taxes support fuckups and malingerers like you."

It’s a wonderfully nasty accusation, but let’s make it clear: since my Unemployment Insurance benefits ran out in September 2000 (benefits to which I was legally entitled because I was actively looking for new employment within my capabilities), I have not received one cent of government money. Not Disability, not Medicaid, not food stamps. Nothing.

I have, however, paid taxes since 2000, because I do, in fact, work for a living just like the accuser. Even when I don’t earn enough to pay income taxes, I do still pay property taxes, sales tax, and Social Security tax on every cent of my earned income.

There is absolutely no evidence that I have been supported by anyone’s taxes in the past 7 years. There is ample evidence that I have been working and paying taxes for the past 7 years.

So, before you give in to the urge to call me a social parasite, get your facts straight. I may not pay as much in taxes as you do, but I do earn money and pay taxes and get nothing in return.

Although there are government-paid housekeepers, I don’t get one of those, either. After the incident with being thrown out of my house because hired cleaners didn’t clean, Social Services did come over to evaluate me, and agreed that I do need household help, but that I do not qualify for any government household assistance program because I am neither receiving Disability nor over age 65. The way things are going with my SSDI claim, I’ll be eligible for a housekeeper by virtue of being over 65 before I am officially declared disabled.

That’s right – your 65-year-old neighbor who is still healthy enough to run marathons is eligible for a free government housekeeper, but this physically disabled woman is not. If I want one, I have to pay for it myself, which costs about as much as I earn in a week, leaving nothing for groceries or utility bills.

So, to quote my abusive correspondent, "put that in your pipe and smoke it".

If you take issue with disabled people being entitled to Disability benefits, then, as I have suggested previously, work with your employer to hire those who are collecting Disability. Persuade your employer that someone who can work 1 hour a day is a good hire, or that someone who calls in sick twice a week is the employee of their dreams.

The problem is not that the disabled don’t want to work, but that employers don’t want to hire them. My SSDI judge keeps referring to the fact that "with your qualifications, you should have no trouble finding a job", and, in fact, my qualifications were getting me plenty of interviews. The problem was when the employer saw some indication of my disability – the wrist braces, the exhaustion just from getting to the interview, the sudden need to flee to the ladies room to avoid having diarrhea all over their rug – and ended the interview because they had sincere questions about whether I could do the job. It’s clear from my own experience that applying for jobs is not enough, interviewing for jobs is not enough, you have to be able to convince the employer that you can do the job, and if you tell the truth "I’m limited in how long I can type" or "at times I will need to lie down for an hour or two during the work day" or "some days I will spend half the day in the ladies room", you can have impeccable references and qualifications and they’re going to pass you over in favor of a lesser applicant who is healthier. Or you can lie about it and be fired when they discover that you need to lie down so you won’t faint, spend an inordinate amount of time having diarrhea, and after typing a for a while your muscles become fatigued and will no longer cooperate with the signals they receive from your brain.

The Ninth Circuit has ruled that "work when able" is not an ADA-required accommodation. Someone with CFS who needs an excessive number of sick days cannot demand an employer provide that to them. Yes, if you have a relative or close friend who owns a business, you may be able to get that accommodation because they love you, but you will not get it out in the real world. The law says employers are not required to give it to you, and nowadays, most employers are driven by the bottom line and not compassion.

Unfortunately, more than half of CFS patients who are too sick to work are denied Disability benefits because of the misperception that CFS is fakery and that there is no way to prove they are ill. In fact, there are many blood tests, neurological tests, brain scans that will come back abnormal, but those tests are not routinely performed. (In my case, the judge sees that my diagnosis is CFS and refuses to acknowledge any of the abnormal test results because he doesn’t think CFS is real, therefore, the abnormal test results cannot be real, either. He’s ruling not on my actual ability to work but on his prejudice about my diagnosis. In fact, long-time CFS researcher Dr. Nancy Klimas observed at a CDC press conference last year "there's evidence that the patients with this illness experience a level of disability that's equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis." If people with those diseases are granted Disability benefits, then by law an equally-impaired CFS patient should be getting benefits, too. Unfortunately, that’s rarely the case, because the same symptoms that are acceptable and believable in MS are considered "not credible" when reported by a CFS patient. The determination which should be made solely based on a Functional Capacity Evaluation is often made on prejudice for or against the name of the disabling condition; my uncle with cancer was told he could have benefits just because he had cancer and no evaluation was required ... and he was, at the time, far more able than I have been at any point in the past 7½ years.)

And here’s the really frightening part: it’s caused by a virus for which there is no vaccine, no treatment, no cure. You could be the next victim, and you could wind up living in the streets because the lucky few who do finally get their Disability benefits have to fight for them for years. The leading California case on the subject, the victim had to wait 10 years and get the Court of Appeal to order her benefits, because the SSDI judge continually refused to accept the medical evidence presented. (Just like has happened to me for the past 7 years.)

Thursday, November 1, 2007

Self within a climate of Contention EXCERPTS #1

Source Social Science & Medicine EXCERPTS

URL: http://www.sciencedirect.com/science/journal/02779536

Self within a climate of contention: Experiences of chronic fatigue syndrome

Michele Kerry Travers(*), Jocalyn Lawler Faculty of Nursing & Midwifery, University of Sydney, Australia * Corresponding author. E-mail addresses: mtravers@nursing.usyd.edu.au (M.K. Travers), jlawler@nursing.usyd.edu.au (J. Lawler).

Background

The potential for chronic illness to disrupt the integrity of self-perceptions has been well documented and there is a substantial body of research that describes a general process of damage and repair to self. Over two decades, there has been a conceptual shift in the constructions of chronic illness from loss and burden to normality and transformation, and caution has been expressed regarding the idealisation of the chronically ill person as powerful and able, while minimising the multifaceted nature of chronic illness that includes disabling aspects (Thorne & Paterson, 1998). The lives of people with chronic illnesses, for example, have also been described as 'tumultuous existences' and 'fractured' (Vickers, 2000, p. 4). Alongside the potential for positive transformation resides ongoing loss and suffering.

Chronic illnesses that are outside the confines of medical legitimacy, that is, contested illnesses, offer a different prism for the investigation of self-perceptions. Illness experiences of people with contested conditions include an additional burden related to scepticism and dissension. People with contested conditions typically report disbelief from medical practitioners regarding their symptomatic accounts (Glenton, 2003), psychological explanations for physical symptoms (Garro, 1994) and an absence of medical care (Gibson, Placek, Lane, Brohimer, & Lovelace, 2005). Contention brings with it judgments about those affected. There is evidence that medical practitioners perceive people with contested conditions as possessing negative qualities, such as illness-fixation and pessimism (Asbring & Narvanen, 2003). This context of delegitimation influences illness experiences, with reports of contention contributing to altered self-perceptions, for example, disrupted identity among people with multiple chemical sensitivity (Gibson et al., 2005), and feelings of worthlessness and 'character blemish' (p. 2249) among people with back pain (Glenton, 2003).

Chronic fatigue syndrome (CFS) is a high profile contested condition. Detrimental effects to the individual are significant, with research indicating marked functional impairment (Buchwald, Pearlman, Umali, Schmaling, & Katon, 1996), low levels of social support (Schoofs, Bambini, Ronning, Bielak, & Woehl, 2004) and a poor quality of life (Rakib et al., 2005). These detrimental personal effects are reported in other contested conditions and represent burdens common to delegitimised illnesses (Gibson et al., 2005).

Another study of the ways people learn to live with CFS identified two experiential phases (Edwards, Thompson, & Blair, 2007). Phase 1, 'overwhelmed by CFS', was characterised by 'a really awful time', 'an invisible illness' and 'fighting it' (p. 206). Phase 2, 'learning to live with CFS' included characteristics of self-help, learning to 'pace', and positive thinking (p. 206). Movement occurred between phases, with mediating factors influential to feelings of control. The characteristic of movement/progression described in the findings of these two studies is a feature widely reported in the chronic illness literature (Paterson, 2001), suggesting it is related to chronicity rather than representing a phenomenon specific to contested conditions or CFS in particular.

Clarke and James (2003) reported that, over time and in response to separation from their previous everyday lives, people with CFS rejected former selves and established new selves. Clarke and James noted that their findings contrasted with earlier chronic illness research in which a desire for a former, restored self is reported. They explained this difference as arising from the contested nature of CFS and suggested that this contention denied people with the condition a legitimate place in the social order. In the absence of legitimising discourses, people created new identities, that is, a radicalised self. These findings suggest that contention results in experiences of self different to those encountered with legitimated chronic conditions.

Other researchers have reported a disrupted sense of identity and competence (Gray & Fossey, 2003), a loss of self (Edwards et al., 2007), and low levels of self-esteem among people with CFS (White & Schweitzer, 2000). Partial but significant biographical disruption, identity transformation and illness-related positive outcomes have also been reported (Asbring, 2001). While the research on self is limited, findings indicate that changes to self-perceptions arise from CFS and that its contested position is of significant influence.

By providing a different contextual prism, investigation of contested conditions explicates additional insights and strengthens existing knowledge of chronic illnesses while also deepening the understanding of the experience of living with a disreputable illness. This article describes the effects to self and concomitant responses that together constitute the CFS experience, thereby providing insight into the lived world of people whose chronic illness is marginalised by the biomedical model and whose symptoms remain medically, socially and culturally disputed.

Findings

Experience of CFS: struggling self seeking renewal

The Guardian Response sought to provide protection and self-reclamation, while the Reconstructing Response fostered self-renewal.

Threats of CFS

There were two types of threats associated with CFS; disruption and invalidation. Threats of disruption arose from the chronic nature of the condition and included body failure, unpredictability, illness invisibility, functional impairments, dependency and loss. Threats of invalidation were derived from the social construction of CFS as a contested illness with a disputed 'reality' and exposed participants to an additional dimension of threat not found with legitimated chronic illnesses. Threats of invalidation trivialised suffering and relegated participants to a position of inferiority. They included stigma, disbelief, turning the abnormal into the normal, the attribution of negative qualities and responsibility, dismissal and commandeering of symptoms; for example,

Suddenly everyone started to get the symptoms of it at work. They all thought they had it as well and that was really annoying... it was like making a mockery of it. They were just thinking it was a little bit of tiredness. (Female, 34 years, recovered after 6 year illness, full-time secretary).

Participants found that invalidation was a defining response of others to their illness. It represented a pervasive and enduring experience that contributed to perceptions of violation.

Violation of self

CFS was associated with violation to self, a constant but fluctuating presence resulting in a struggle for self-reclamation and renewal. Violation began with the failure of participants to recover, when they started to question their beliefs, perceptions of reality and sometimes sanity. Generally, their self-doubts were the same as the doubts of others, that is, doubts about the reality of CFS, the legitimacy of their impairments and their responsibility for the illness. Although mostly episodic, self-doubt contributed to violation by throwing into disarray the participants' perceptions of themselves as experts in and of their own lives, alienating their connection to the known-self. Self-doubt was commonly paired with self-blame, as typified by this participant,

There's also a constant feeling of maybe there is something I can do myself to make it better. Maybe the headaches are my fault 'cause I'm feeling tense, or I'm not taking the right vitamins. Maybe there's something I can do. And then you try it and no, that wasn't it. (Female, 58 years, previously adult education officer, retired due to CFS).

While self-blame was mostly intermittent, it was always problematic. Participants felt responsible but did not know why. Through what was potentially an infinite process of exclusion, participants searched (for a time) to find the trigger, behaviour or unresolved conflict underlying their illness. This search was commonly used against participants with accusations of hypochondriasis or malingering reported. Self-blame resulted in self-perceptions of inadequacies and moral flaws.

The Violated Self involved diminishment and loss of the known-self and the taken-for-granted. Participants reported that significant aspects of self had been markedly changed, and this change was undesirable and damaging. They had been reduced to an inferior version of their before-CFS-self, for example,

I feel like I'm the ugly twin that has nothing to offer... I think probably the foremost thing would be that I just feel like I'm so different. (Female, 39 years, full-time government officer).

Participants retained some measure of stability because a few core attributes were felt to be dormant rather than lost, nevertheless, the diminishment of valued qualities resulted in biographical disruption (Bury, 1982), a loss of self (Charmaz, 1983) and a weakened identity. Identity was also violated by the loss of future identities and identity sources, particularly family and work roles. One participant described the loss of her expected future identity this way,

People who knew me before - I met one recently and she was gob-smacked that I was a housewife because that's not what I'd planned, it's not what I'd envisaged, and it's probably not what I would have done. (Female, 47 years, previously a health worker, retired due to CFS).

In sum, CFS compromised attributes of self-definition, disrupted biographical continuity and reduced perceptions of a positive future.

The integrity of past, present and future relationships was violated. As their inability to socialise, work and fulfill relational obligations continued, or as disbelief from others regarding the veracity of the illness grew, there was a gradual disappearance of existing relationships and participants found themselves rejected, forgotten or ignored. In addition, the capacity to establish new relationships was diminished.

Guilt and shame reflected perceptions of personal failure and inferiority and consequently, were associated with decreased self-worth, isolation and estrangement. Participants felt displaced from their own lives and from humanity. This displacement specifically arose from invalidation (notably stigma) and neurocognitive disturbances, and was felt as a dislocation or altered reality that resulted in estrangement. One participant described the relationship between impaired memory and estrangement in this way,

With my memory loss I forget tracks of my life, people, conversations... that's where I think you get this sense of [being] removed from reality because your memory is playing such tricks on you. (Female, 47 years, previously a health worker, retired due to CFS).

Further, they felt their lives had stalled or were suspended while they waited for a return to health. As described by this participant, they had lost their place in the progression of life.

It's like the earth has stopped, but all of a sudden something is going past you... I'm existing, the whole world out there is living. You're staying still... You can see everyone moving and you just can't. (Female, 29 years, full-time consultant).

CFS and Self -- Part 2

Abandonment, rejection and social invisibility were commonly experienced.

I feel disliked. I feel nobody sees me clearly because I'm basically never seen... a non-person. (Female, 71 years, retired instructor).

Additionally, adult agency became compromised as participants failed to meet responsibilities, maintain independence or recover. Failure was part of everyday life, resulting in a loss of self-worth.

Responses to violation

Violation, with its losses and damage to self, was associated with two categories of responses, guardianship and reconstruction. These response categories were distinguished by their purposes and characteristics, and encompassed strategies used by participants to cope with CFS. The Guardian Response provided care and protection to self from CFS-related threats (including symptoms), while the Reconstructing Response redefined and renewed positive experiences of self. To varying degrees violation was always present, and therefore, the Guardian Response was constant, sometimes functioning at a subliminal or background level and at other times highly vigilant, depending on the strength of violation. Specific conditions were required for the initial development of the Reconstructing Response. Once established, reconstruction was implemented when the threats of CFS had been sufficiently reduced by the Guardian Response and important aspects of self had been reclaimed. However, the Reconstructing Response was not a constant presence but difficult to sustain, and when threats increased violation or guardianship moved to the fore. Each response and the conditions are reviewed.

The Guardian Response

Guardianship was a defensive response that protected participants against threats of invalidation and disruption, thereby reducing violation. It provided an environment for physical and psychological self-care. By fostering care and protection, the Guardian Response sought to retrieve and reestablish dimensions of the known-self that were still available to, or desired by, participants within the boundaries of their changed lives. As such, the response instigated a process of self-reclamation. The Guardian Response focused on self and was characterised by internality, vigilance, self-defense and assuming the burden of proof, as was described by this participant,

[When] you meet with any scepticism, your focus then becomes to prove that you're not malingering. (Female, 45 years, previously a resource officer, retired due to CFS).

Strategies implemented by the Guardian Response included living within limits, seeking and accepting help, gaining knowledge, evaluating health-related encounters and treatments, establishing safe relationships and containing emotions and emotional threats. These strategies were essentially defensive and were typified by the restriction and containment of participants' behaviours, emotions, cognitions and interactions.

Outcomes of guardianship were sometimes paradoxical with positive and negative effects to self. The reduction of activities associated with living within limits, for example, provided protection from over-exertion and subsequent deterioration, but also involved loss of desired roles and activities, social withdrawal and compromised perceptions of self-agency.

Nevertheless, the perceived benefits of self-protection outweighed the costs and guardianship remained a feature of the CFS experience. Despite negative effects, the Guardian Response provided the basis for retrieving and reclaiming valued aspects of self, and was the precursor to the renewal of self found with the Reconstructing Response.

The hardest lesson I think was to give up that [former] life... it was like a death. You had to grieve for that... it was a long time before I allowed that... it took a number of years to readjust my [perceptions of] successes and failures. (Female, 46 years, previously a health worker, retired due to CFS).

Cognitive realisation

An important condition to the Reconstructing Response was cognitive realisation of the symptomatic effects and chronic nature of CFS. This was a slow process hampered by the clinical uncertainty surrounding the condition. Participants remained unable to resume their previous lives; therefore, eventual acceptance of ongoing symptoms and a realisation of their effects became unavoidable, as described by this participant,

You realise you can't do things you'd like to do, and there's no good getting frustrated or uptight or anything else, you've just got to accept it. (Male, 74 years, retired inspector).

The other feature of CFS that required cognitive realisation was its chronicity and the uncertainty of recovery.

What happened for me for the first eight years, was that what you really lived and breathed was the thought that they'd come up with a cure and you'd go back to normal life. And what I realised was they weren't going to come up with a cure in a hurry. (Female, 53 years, part-time writer).

Cognitive realisation allowed participants to begin to turn their focus from eradicating symptoms and seeking treatments towards enhancing their daily lives within the confines of their illness. This opened up the way to a reconstructing response.

If there's a conflict and they're like 'Here, prove it to me', well, that's terribly hard. I can't do that. I just don't have the energy to prove anything... You don't get anywhere usually because people don't like losing arguments. (Male, 38 years, part-time student).

Space for self-reflection

As participants developed their ability to provide self-care and protection or when they experienced some improvement, space became available for reflection on how best to live with CFS. Symptom improvement provided participants with an opportunity to shift attention from monitoring physical experiences to the self-reflection necessary for reconstruction

The Reconstructing Response

Two broad strategies typified reconstruction, firstly, cognitive alteration of expectations (that is, downgrading or shifting of expectations) as described by this participant,

I don't expect myself to conquer the world anymore. I don't place undue pressure on me anymore. (Female, 39 years, full-time government officer).

Seeking new sources of fulfillment was the second broad strategy

Things that I can do, I do, and that impresses me. And when I achieve, it doesn't matter whether it's doing the chores or washing the dog, I've achieved, and that's how you have to try and keep up your self-esteem... in the past I wouldn't even consider those worth noting, so you have to completely re-prioritise everything. It's not easy... but if you get to that point, then you can be really pleased. (Female, 46 years, previously a health worker, retired due to CFS).

Further, the life lessons of CFS fostered perceptions of personal strength and evolution. When participants were able to predominantly enact the Reconstructing Response, they experienced a greater stability of self; however, in practice reconstruction was difficult and remained, to varying degrees, a struggle for most.

Discussion

Our findings are partly consistent with Whitehead's (2006) study that explored CFS experiences using Frank's typologies, in which a pattern of narrative movement was observed starting with restitution, then chaos, followed by a return to restitution and quest.

The fluctuating nature of the struggling self and process of renewal that comprises the illness experience of CFS is a crucial finding. Understanding the dynamic experiential course of CFS assists people with the syndrome and others to recognise inherent variability and be responsive to changing needs. Shifting perspectives is clearly an important feature of chronic illnesses, and the fit between the findings of the present study with the Shifting Perspectives Model provides support for the process of renewal.

With regards to experiences of self among people with CFS, and in partial contrast to Clarke and James (2003), the present study did not find a rejection of the former self in conjunction with the establishment of a new, radicalised self. Instead, a process of selective self-retrieval, in addition to the creation of a new self, was evident. The Guardian Response reclaimed valued aspects of the before-CFS-self (although it could only be partial and sometimes tenuous), and facilitated the conditions necessary for the renewal of self. Thus, the present study found both restoration of a former self and (re)construction of a new self. By reclaiming self participants were valuing their identity and the person who had been rejected by others, in addition to reaffirming their place in the world despite the displacement imposed on them. In short, reclamation and restoration was self-validation.

Given the limited research on CFS adaptation and associated conditions, the articulation of the conditions necessary for the development of the Reconstructing Response provides an important insight.

While previous research has described numerous strategies enacted in response to CFS, the articulation of distinct response categories provides deeper understanding of the subtleties of the CFS experience. The movement between guardianship and reconstruction suggests that responding to CFS is a nuanced and complex process involving changing needs, paradoxical effects and multiple strategies. Some individual strategies identified in the present study have been previously reported. For example, and most notably, living within limits is consistent with a range of commonly reported strategies characterised by restriction/monitoring of activity (Edwards et al., 2007; Gray & Fossey, 2003).

Further, the strategies outlined in the present study were self-initiated, with participants receiving little CFS-related medical care. Exploration of self-management among people with CFS is yet to be investigated and is of particular importance given the increasing primacy of self-care to the management of chronic illness (Jordan & Osborne, 2007).

Understanding the intricate nature of the CFS experience provides guidance to people with the condition and their practitioners. The study addresses a neglected aspect of CFS research, that is, the subjective world and experiences of self-with-CFS. Participants faced threats arising from the chronic nature of their illness, and as with other contested conditions, there was a further burden of invalidation that brought additional suffering. Violation of self was, to varying degrees, a constant presence, and the defining responses of guardianship and reconstruction that enabled participants to reclaim and renew self, were evidence of adaptation, evolution and healing. Nevertheless, within the everyday experience of CFS, the struggle of self remained. Explication of the process of the struggling self seeking renewal brings to the fore the threatening, monotonous, chaotic, protective and transforming aspects of the CFS experience. It provides insights into living with illness chronicity and contention.

CFS and Self References

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Comments on CFS and Self research

Source Social Science & Medicine EXCERPTS

URL: http://www.sciencedirect.com/science/journal/02779536

Self within a climate of contention: Experiences of chronic fatigue syndrome

Michele Kerry Travers(*), Jocalyn Lawler Faculty of Nursing & Midwifery, University of Sydney, Australia * Corresponding author. E-mail addresses: mtravers@nursing.usyd.edu.au (M.K. Travers), jlawler@nursing.usyd.edu.au (J. Lawler).

Background

The potential for chronic illness to disrupt the integrity of self-perceptions has been well documented and there is a substantial body of research that describes a general process of damage and repair to self. Over two decades, there has been a conceptual shift in the constructions of chronic illness from loss and burden to normality and transformation, and caution has been expressed regarding the idealisation of the chronically ill person as powerful and able, while minimising the multifaceted nature of chronic illness that includes disabling aspects (Thorne & Paterson, 1998).

This is one of the problems I find – the prevailing notion that every disabled person is capable of working full-time if they try, and that all I have to do is get into a good physical therapy/rehab program and I’ll be back to normal.

The problem is, unlike those who are mentally challenged, a CFS patient cannot do physical labor like sweeping streets, because exercise makes the symptoms worse. And unlike those who are in a wheelchair, many CFS patients cannot do office jobs, because of the cognitive/memory dysfunction. I can do brain work only a couple hours a day before my brain shuts down. There is simply no way I could return to my prior job as a paralegal and spend 8 consecutive hours analyzing case law. By the end of the day, the books would look like they were printed in Chinese. Some patients report that they cannot even recognize the language of their morning newspaper because the cognitive dysfunction is always there, even when they first wake up and their brain is supposedly well-rested.

In the past, disabled people were expected to stay home, out of sight. With the success of some high-profile disabled people, modern society has idealized the disabled as hard-working paragons of virtue. You’re supposed to be able to get hired for any job you want, do it as well as any non-disabled person, and never ever let on that you’re in pain.

That seems to be the biggest problem with trying to educate people to the reality of CFS, that it’s not just "feeling sleepy". As soon as I mention the constant pain, I get accused of "whining", even if I state it factually and unemotionally.

Threats of invalidation trivialised suffering and relegated participants to a position of inferiority. They included stigma, disbelief, turning the abnormal into the normal, the attribution of negative qualities and responsibility, dismissal and commandeering of symptoms; for example,

Suddenly everyone started to get the symptoms of it at work. They all thought they had it as well and that was really annoying... it was like making a mockery of it. They were just thinking it was a little bit of tiredness. (Female, 34 years, recovered after 6 year illness, full-time secretary).

This is another of the problems. People just don’t understand how overwhelming the exhaustion is. The word "fatigue" doesn’t even come close to explaining the full-system shut-down that affects both brain and body. They give me rationale about how they go to work when they’re tired (with a lifelong history of transient insomnia, I’ve done it, too) without understanding that you cannot go to work when you are so exhausted that you cannot even get out of bed without crumpling to the floor.

The integrity of past, present and future relationships was violated. As their inability to socialise, work and fulfill relational obligations continued, or as disbelief from others regarding the veracity of the illness grew, there was a gradual disappearance of existing relationships and participants found themselves rejected, forgotten or ignored. In addition, the capacity to establish new relationships was diminished.

Every time I had to ask my husband for help with household chores, it was another chunk out of the foundation of our marriage. He muttered quite frequently that he "didn’t get married to have to cook and clean", and generally acted like I’d gotten sick solely to inconvenience him. He began spending more time away from home in order to avoid having to help with the chores – if he returned after I’d gone to bed, I couldn’t ask him to do anything.

Friends with active, busy lives always made it clear that I was welcome to socialize on their terms: come out to jet-ski with them, or come out to their child’s soccer game. They couldn’t grasp that I needed them to come to my house so that we could have a nice visit with me lying down on the couch, that even traveling to and sitting up for an hour soccer game would send me back to bed for a few days. Hiking, jet-skiing, playing softball, etc. were absolutely beyond me. Eventually, my friends completely forgot me, having replaced our friendship with that of someone who could keep up with them and do what they were interested in.

Similarly, my grandmother always told me "you won’t meet a boy sitting at home all the time". If you’re mostly home-bound, you don’t meet new friends. And when I do go out, it doesn’t take long and I look exhausted ... hardly the way to attract people.

Thanks to the internet, I have a wide social circle, but none of those friends lives close enough to go out to lunch. The men I "meet" are CFS activists: fascinating to talk to, but again, neither of us has it in us to go out on a date.

 

If there's a conflict and they're like 'Here, prove it to me', well, that's terribly hard. I can't do that. I just don't have the energy to prove anything... You don't get anywhere usually because people don't like losing arguments. (Male, 38 years, part-time student).

I’ve been in that situation so many times that I’ve lost count. People who are convinced that CFS is a figment of your imagination will discount any evidence you offer, insisting that any research that contradicts their viewpoint is fraudulent or skewed.

Two broad strategies typified reconstruction, firstly, cognitive alteration of expectations (that is, downgrading or shifting of expectations) as described by this participant,

I don't expect myself to conquer the world anymore. I don't place undue pressure on me anymore. (Female, 39 years, full-time government officer).

Seeking new sources of fulfillment was the second broad strategy

Things that I can do, I do, and that impresses me. And when I achieve, it doesn't matter whether it's doing the chores or washing the dog, I've achieved, and that's how you have to try and keep up your self-esteem... in the past I wouldn't even consider those worth noting, so you have to completely re-prioritise everything. It's not easy... but if you get to that point, then you can be really pleased. (Female, 46 years, previously a health worker, retired due to CFS).

Personally, I have a prioritized list of chores that need doing. Some days, I’m so sick that I get as far as #1 on the list: feed the cats. But it’s an accomplishment for that day.

If I can cross off 5 items, I’m pleased with myself.

I learned long ago that even when my brain is fried, I can crochet granny squares from muscle memory. I buy and bag up yarn in baby blanket quantities, and when I’m really sick, I just reach for one of those bags. I crochet around and around till I run out of yarn, and that’s my indication that it’s the right size. When I get about a dozen of them, I take them to the battered women’s shelter. It gives me a sense of being a productive, contributing member of society.

Understanding the intricate nature of the CFS experience provides guidance to people with the condition and their practitioners. The study addresses a neglected aspect of CFS research, that is, the subjective world and experiences of self-with-CFS. Participants faced threats arising from the chronic nature of their illness, and as with other contested conditions, there was a further burden of invalidation that brought additional suffering. Violation of self was, to varying degrees, a constant presence, and the defining responses of guardianship and reconstruction that enabled participants to reclaim and renew self, were evidence of adaptation, evolution and healing. Nevertheless, within the everyday experience of CFS, the struggle of self remained. Explication of the process of the struggling self seeking renewal brings to the fore the threatening, monotonous, chaotic, protective and transforming aspects of the CFS experience. It provides insights into living with illness chronicity and contention.

Being told that you don't feel what you feel, that you're imagining things, that the doctor "can't see" what you and those around you can see is a major violation of self.  You're told to discount your own observations and believe what you're told by someone else -- in any other situation, that would be called "psychological abuse".

Tuesday, October 30, 2007

CFS lecture in Perth -- objective evidence of digestive problems


Prof Kenny De Meirleir Speaking in Perth, WA.

Prof. Kenny De Meirleir & Dr. Henry Butt will be speaking to health
professionals and PWMEs in Perth Saturday 3rd November 2007 on ME/CFS.

A majority of patients with ME/CFS report gastrointestinal symptoms
and dysfunction, alongside other common symptoms such as cognitive
difficulties, muscle and joint pain, neurological disturbance and
abnormal persistent or fluctuating fatigue.

Prof. De Meirleir will discuss evidence indicating ME/CFS patients have a compromised lining of their gut similar to that found in HIV.
He will explore links to evidence suggesting the gut of patients is
infected with bacterial and/or viral pathogens and how this may
contribute to an altered immune state. Prof. De Meirleir will
describe treatments that have successfully restored the gut lining of
patients and led to a significant improvement in multiple symptoms.

Dr. Butt will discuss evidence indicating significant changes in the
normal bacterial population found in the gut of ME/CFS patients. He
will explore a close correlation between the severity of symptoms
reported by patients (cognitive dysfunction, gastrointestinal
symptoms, pain and fatigue), the degree of changes observed in the
population of gut bacteria, and the quantity of microbial bi-products
produced and released into the body.
Prof. Kenny De Meirleir MD PhD
is Professor of Physiology, Pathophysiology, Internal Medicine and
Sports Medicine at Vrije Universiteit, Brussels, and Clinical
Professor, University of Nevada Medical School, USA. Dr. Henry Butt
MSc PhD is Director, Bioscreen Laboratory, and Senior Fellow (Hon) at
Bio21 Molecular Science & Biotechnology Institute, University of Melbourne.

Venue: Social Sciences Lecture Theatre, University of Western Australia.

Sleep

One reason for the perception that CFS=depression is the amount of time CFS patients spend in bed.

My first specialist explained it quite succinctly, that I might be spending 20 hours in bed with my eyes closed, but if I was never getting into the Stage 4 deep healing sleep, I was getting less out of those 20 hours than someone who spent 8 hours sleeping well. Numerous sleep studies have shown that CFS patients get little or no Stage 4 sleep, and many exist in a sort of twilight world, not quite asleep but not quite awake, either. It’s not "sleeping for escapism", but trying to get the same amount of rest and recuperation provided by 8 hours of good sleep. His recommendation (seconded by other CFS specialists) is that the first step in treatment must be fixing the sleep problem; if you don’t do that, then everything will continue getting worse because of lack of quality sleep.

In this relapse, I’ve had the added problem of pain from arthritis, bursitis, tendinitis and just plain overuse. Because no sleep study was ever ordered, my doctors didn’t have to deal with the objective proof that my spending 20 hours a day in bed might only produce 3 hours of actual sleep (and poor quality at that). They wanted to hear that I was depressed over the divorce, so there was, in their minds, no need for a sleep study. In fact, the sleep study would have proven that I was not, as they chose to understand, "sleeping" 15-20 hours a day, but spending 15-20 hours "in bed" simply trying to get enough sleep to not die from extreme sleep deprivation. There’s a big difference between "going to bed" and "going to sleep", as any mother of a toddler on his sixth potty trip can tell you.

Had a sleep study been done, the treatment might have been different. Instead of, as one doctor stated he understood, that the problem was "sleeping too much", they would have had to confront head-on my statements that both quality and quantity of sleep were affected by the pain that started the vicious cycle of insomnia (fibro-like symptoms can be induced in healthy volunteers just by depriving them of sleep, and that pain goes away when they are allowed to return to a normal sleep schedule). A sleep study would have verified the truth of my statement that every time I rolled over onto my painful left shoulder, I woke up, and remained awake. A left shoulder that was so affected by bursitis that I couldn’t raise my arm even all the way to shoulder level; but because the doctor was attributing all my problems to psychological reasons, it was almost two years after the shoulder problem started before anyone checked the range of motion in that shoulder, and saw I could not raise the arm over my head. I knew it was a problem – for weeks, I had been unable to access the top file drawer at work because I couldn’t get my left arm up high enough to assist my right in lifting the heavy older files stored there – but no one was listening to my full recitation of objective problems, because they had the erroneous depression diagnosis to explain away the pain. (In fact, CFS patients describe a much different type of pain than people with depression. When I was diagnosed, I complained that "even my hair hurts" ... a sure sign of neurological involvement!)

There was, in their minds, no reason to do a physical exam because if I had depression, there would be nothing to find on a physical exam. One doctor never asked me to undress at all; he saw no need to perform any sort of physical exam on a CFS patient, not even to check for the telltale swollen glands. In fact, if they’d done a physical exam, or taken a thorough injury history, they would have found legitimate reasons for my pain: post-traumatic arthritis from old sports injuries and three fractured vertebrae. But because I have CFS, there was "no need" for any further investigation of any symptom, they assumed it was all caused by the CFS, and therefore, there was "no need" for the pain medication that would be given to someone who had arthritis without CFS.

Add in the fibromyalgia, which is easiest explained as "The Princess and the Pea". When my fibro is in flare, a small wrinkle in my nightgown can feel like an iron rod under my hip. I spend a lot of time getting out of bed and smoothing wrinkles out of the mattress pad, the sheet, the sleepwear, and the next time I shift position trying to get comfortable, I have to do it again. Fibromyalgia has been demonstrated to be caused by abnormal levels of the pain-processing chemical Substance P; it’s not baseless hypochondria, but has a legitimate biochemical origin.

Informed specialists believe that the first step in treating CFS is to address the sleep problem. This does not mean that CFS=insomnia, but that if sleeping pills and pain pills can help the patient achieve Stage 4 sleep, the body can begin to heal itself. Once I had been sleeping well for a few months, my immune system re-activated and finally began attacking the virus; I ran a 101 fever non-stop for six months. Three years after first requesting a sleeping pill, I finally had the proof that what I asked for was the correct treatment for what truly ailed me. But that was three years of physical damage from the virus that didn’t need to occur, while I was being treated for "depression" which I didn’t have.

When you sleep better, everything else works better. That is such a basic tenet of medicine that it’s inexcusable for doctors to ignore patients’ requests for something to help them get adequate sleep. As one of the later specialists inquired "what would it have hurt?" for them to humor me with a trial run of sleeping pills. It would have hurt the doctor’s ego to have his diagnosis proven wrong, but it would have prevented further hurt to my body. His arrogance led him to act in ways that were detrimental to the patient’s health, and I will pay the price for his ego-centric approach to medicine every day for the rest of my life.

It’s simply counter-productive for a doctor to tell the patient what she "should" be feeling instead of listening to what she actually reports, and to insist that she must be confused if she thinks a prescription made her worse instead of better. Dr. Groopman’s book makes it clear that if the treatment doesn’t work, the problem is the diagnosis and other possibilities should be considered. Those other possibilities should not include verbally abusing the patient for "refusing" to get well; if the patient did not want to get well, she would not be spending money on doctors and prescriptions!

Anti-depressants work wonders on depression. They do absolutely nothing for post-viral CFS. Had my doctors known that, they would have recognized that the reason I kept saying the anti-depressants didn’t help was because they’re not supposed to help what I was previously diagnosed with, and therefore, I clearly did not have "post-divorce depression" as assumed.

One of my teachers used to say "a little learning is a dangerous thing". And it’s true. Knowing "a little" about CFS can be very dangerous if all you know is that it has something to do with fatigue, and depression also causes fatigue, so you’re going to treat it like depression. Doctors who know it has neurological components will understand why the patient complains of pain without obvious injury – neurological damage cannot be seen with the naked eye, and why the patient complains of cognitive/memory problems – brain lesions cannot be seen with the naked eye, and that these things cannot be fixed by treating the patient for depression, nor by jollying the patient "you can do it if you try harder". No polio patient has ever been made to walk by mere cajoling, and no true CFS patient will ever be cured by being coaxed to "do more". (A true CFS patient will relapse if she exceeds her known limits in following doctor’s orders to "do more and you’ll feel better".)