There’s a whole industry that involves measuring the survival techniques and truths of people with CFS, then pointing the finger at them for causing their own illness with their Scientifically! Proven! personality “deficits”.

Here’s the latest product of that industry. They took 38 Belgians with CFS, all non-pregnant non-depressed women, diagnosed using CDC definitions (which are very non-specific) and attending a hospital outpatient clinic for CFS. The fact that they’re attending a hospital suggests to me that these are women with moderately severe CFS, unlikely to be mild, unlikely to be housebound.

They were compared to 42 “healthy female volunteers”, recruited “via the hospital staff”, we know not how. They then were all run through a self-administered personality questionnaire. The “controls” were matched only for age and education, not for, say, poverty.

The Discussion section is a triumph of scientific inconsistency, contradiction, and interpreting the results whichever way makes the PWCFS look the worst. I haven’t read anything this intellectually dishonest in quite a while. (Though a quick flick through the The Academy of Psychosomatic Medicine’s annals might quickly put paid to that.)

This study shows that in the eyes of the psychosomatic True Believers, no matter how you react to your illness, you are wrong.

Excerpted:

Use of the Temperament and Character Inventory (TCI) for assessment of personality in Chronic Fatigue Syndrome
Psychosomatics Vol. 50, #2, pp. 147-154
Date: March/April 2009
Elise Van Campen et al

The aim of this study was to examine the association between CFS and personality traits measured with the TCI self-report questionnaire. The main findings are that CFS patients scored higher on Harm-Avoidance and Persistence, and lower on Self-Directedness compared with healthy-controls.

The elevated Harm-Avoidance scores suggest that CFS patients tend to be more cautious, careful, fearful, insecure, or pessimistic, even in situations that do not worry other people.9

In situations that don’t worry volunteers with no illness, you mean. Sick people who have experienced over and over again trouble getting back to their car after an outing, sudden exhaustion meaning they have to lie down right away in a place they can’t lie down, pain crescendos that need immediate attention, people who have had to stop paid work and have seen their friends peel away one by one and their life savings disappear, people who have had to fight tooth and nail for disability payments and accommodations, people who scrimp every month to afford their medication: these people tend to be a bit careful in planning their activities, and overall feel a little less optimistic that life is coming up roses for them.

The higher levels of the subscales Anticipatory Worry and Pessimism and Fatigability and Asthenia explain more specifically the elevated scores on the Harm-Avoidance scale. The present finding of increased Harm-Avoidance in CFS is consistent with the results of Jiang and colleagues.13 Furthermore, Christodoulou et al.12 also found increased levels of Harm-Avoidance in CFS; however no elevated score on the subscale Shyness with Strangers was found in the present study.

There are no surprises here, are there? People with CFS scored around 6.4 on Anticipatory Worry compared with 4.4 for normals. I would have expected higher, actually, given how much PWCFS have to forward-look and arrange their lives to keep on functioning.

Anticipatory Worry is a functional adaptation in people who have to pace themselves in order to keep a modicum of physical stability. It is a component of listening to your body and adjusting your activities and expectations in a reasonable way.

The higher score of CFS patients on the Fatigability subscale was expected, since significant fatigue is the cardinal symptom of CFS.

SotBO (Statement of the Bleeding Obvious). In fact, the difference in Fatiguability was by far the biggest influence on the overall Harm-Avoidance scale differential.

Only later in a brief note about study weaknesses do the authors admit: “Harm-Avoidance scores, for instance, may be influenced by chronic diseases.”, and concede “this study lacks a comparison with any other chronic illness”. Noooooo. Really?

The elevated scores on the Anticipatory Worry and Pessimism subscale suggest that CFS patients tend to anticipate harm and failure and tend to have difficulties in getting over humiliating and embarrassing experiences.9

CFS patients who are quite sick anticipate harm and failure. Perhaps because they’ve experience harm and failure over and over and over again. This is called “being in touch with reality”. If PWCFS had normal scores for optimism and happy-go-luckiness and go-out-and-have-a-go-no-matter-what-the-cost, you’d be pathologising them for not being in touch with the realities of their illness, and for having unrealistic expectations.

Contrasting with results of other studies,12,13 these CFS patients had higher scores on Persistence than did the healthy-control subjects. Despite the lack of an exhaustive, specific genetic and neuroanatomical base, phenotypic factor-analysis shows that the Persistence factor is a fairly distinct temperament dimension of personality.10 On the other hand, there are doubts about the internal consistency of the Persistence scale.20

The increased score on Persistence suggest that CFS persons tend to be industrious, hard-working, and stable, despite frustration and fatigue. They tend to perceive frustration and fatigue as a personal challenge. However, when contingencies change rapidly, persistence becomes a mal-adaptive behavioral strategy.9 CFS sufferers have been described as “workaholic,” Type A-like,” “unable to set limits on demands of others,” and “high achievers.”27,28 It appears that in top competitors, overtraining can be a precipitating factor in developing CFS,29 and a premorbid “overactive” lifestyle frequently precedes the onset of illness in CFS patients.28,30

And…. snap. There it is. Find a positive characteristic, the stubbornness and persistence that PWCFS have had to develop in order to cope with their lives, and point the finger. How dare they tend to be hard-working! They brought this on themselves! How dare they be stable in the face of frustration and fatigue!

Note that these researchers did not measure personality traits before illness, only after. They have no idea what these people would have measured before they got sick.

Consistent with these findings, exaggerated persistence may predispose to CFS. In the long run, maladaptive persistence may lead to physical overburdening by a negligent attitude toward the needs of the body, musculoskeletal overuse or strain, and/or sleep deprivation. Overburdening by physical and emotional stressors may, in susceptible individuals, lead to neuroendocrine and immunological dysfunction, paving the way for various stress-related disorders, including CFS.31

Aha, so PWCFS should listen to their bodies and adjust their activities and expectations in a reasonable way? Didn’t we just blame them for doing just that? I can’t keep up.

A tendency to exceed physical limits (in work or sports) to support reward can be a way of coping in order to maintain self-esteem. A focus of psychotherapy, therefore, could be to help patients to better recognize and respect their limits and substitute their previous “overactive” lifestyle with a more balanced activity/rest schema.

You just told us that PWCFS who do that score an excess in Harm Avoidance, and that this makes them Broken. Make up your damn mind.

These therapeutic strategies may enable CFS patients to reduce chronic stress by making more realistic and priority-based life choices, learning more adequate ways of dealing with negative life events and distressing emotions, basing their self-esteem not solely on achievement-oriented activities, working less obsessively and perfectionistically, responding more assertively to the others’ demands and expectations, and expressing their own needs more directly and explicitly.30

Well, we NEVER would have thought of that on our own. Thank goodness we have the Academy of Psychosomatic Medicine to tell us poor self-deluded chumps how to manage our lives.

CFS patients displayed a reduced Self-Directedness, as compared with healthy control subjects, although the levels of significance for Self-Directedness did not withstand Bonferroni correction for multiple testing. Nan Jiang and colleagues13 also reported a negative correlation between Self-Directedness and CFS. The subscales 1 (Responsibility versus Blaming) and 5 (Congruent Second-Nature versus Bad Habits) more effectively explain the decreased Self-Directedness score.

Individuals who score low on the Responsibility subscale (Subscale 1) tend to blame other people and external circumstances for what is happening to them. They feel that their attitudes, behavior, and choices are determined by influences outside their control or against their will.9

…because they often are. I can’t just make a Choice to go skiing next month. I know that’s not going to happen. This choice is determined by influences outside my control. There’s that whole unspoken Accepting That Reality Is Real subscale, on which I seem to score quite high.

Individuals who score high on the Congruent Second-Nature versus Bad Habits subscale (Subscale 5) have developed a spectrum of goal-congruent good habits, so that they automatically act in accord with their long-term values and goals.9 This is achieved gradually, as a result of self-discipline, but eventually becomes automatic (“second-nature”). The low scores on this subscale in the CFS group suggest that CFS patients experience themselves as individuals who manifest habits that are inconsistent with and make it hard for them to accomplish worthwhile goals.9 Van Houdenhove33 suggested that CFS patients suffer from a fundamental discrepancy between what they want to do and that what they are able to do. Unrealistic goals may explain this fundamental imbalance.

This is around the point at which my head met my desk. There’s a discrepancy between what I want to do and what I’m able to do? NO REALLY TELL ME AGAIN. I can’t get enough of that shit.

Shorter Van Campen: People with CFS worry about what’s going to happen to them, avoid activities that harm them, and set their sights too low. This is maladaptive. People with CFS also don’t worry enough about what’s going to happen to them, persistently engage in activities that harm them, and set their sights unrealistically high. This is maladaptive.

Both of these sets of maladaptive traits, obviously, are causing and perpetuating their illnesses. We psychotherapists can work on this. See me every week for the rest of your life. Ka-ching.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Here are the data, in case you want a peek yourself.

-------------------------------------------------------------------------------
TCI Dimension                 CFS Patients        Control Subjects  p
                               (n=38)              (n=42)
-------------------------------------------------------------------------------
Novelty-Seeking               17.87 (4.46)        18.29 (5.72)      0.382
Harm-Avoidance                22.89 (6.07)        14.93 (6.23)      0.001
    Subscale 1:                 6.45 (2.09)         4.38 (2.50)      0.001
      Anticipatory Worry
    Subscale 2: Fear of         4.95 (1.68)         4.24 (1.82)      0.092
      Uncertainty
    Subscale 3: Shyness With    4.24 (2.42)         3.36 (2.06)      0.104
      Strangers
    Subscale 4: Fatigability/   7.26 (2.11)         2.95 (1.85)      0.001
      Asthenia
Reward-Dependence             18.84 (3.34)        18.62 (3.39)      0.735
Persistence                    5.45 (1.54)         3.67 (1.82)      0.001
Self-Directedness             31.29 (7.12)        34.60 (5.47)      0.028
    Subscale 1: Responsibility  5.61 (2.14)         6.57 (1.71)      0.033
      vs. Blame
    Subscale 2: Puposefulness   5.82 (1.83)         6.21 (1.41)      0.392
    Subscale 3: Resourcefulness 3.55 (1.48)         3.90 (1.17)      0.379
    Subscale 4: Self-Acceptance 8.11 (2.17)         8.26 (1.94)      0.796
    Subscale 5: Congruent       8.21 (2.58)         9.64 (1.94)      0.007
      Second-Nature
Cooperativeness               35.13 (4.87)        35.64 (5.16)      0.422
Self-Transcendence            10.03 (6.17)        10.26 (6.47)      0.965
-------------------------------------------------------------------------------

©2013 FWD/Forward. All Rights Reserved.

This is my first personal post about being sick. A “coming-out”, to some of my online friends. And a whole lot of elaboration, for those who know I’m sick, but don’t know the details. It’s taken me ages to write, and I haven’t re-drafted it: here are my musings, in the raw.

Becoming Sick

I have moderately severe chronic fatigue syndrome, or something that looks very much like it. I first got sick two and a half years ago, quite suddenly. After a few months of feeling just a bit off, not bouncing back with my self-prescribed generic good-food-and-fun-and-exercise cure for tiredness, I suddenly crashed. Over the course of about two weeks, I crashed hard. I became unable to work, and daily living was full of what suddenly seemed to be insurmountable obstacles. I dropped things, felt off balance, walked into things, had large-muscle twitches, thermoregulation problems, I was suddenly blanketed in pain. My short-term memory came and went and I couldn’t concentrate on more than one thing at once, a huge change in cognitive function for me. Most noticeably, activity didn’t pick me up like it always had in the past. Before, if I felt a little off I could go for a bike ride or a swim or a choir rehearsal or a night out dancing, and feel invigorated by it. After, I’d walk a couple of blocks then flump down absolutely exhausted. This was the first time I’d ever felt like this, and it didn’t make any sense! I felt happy enough, apart from being terrified that there was something awful wrong with me (lupus and MS were high on the differential at the time); there were no clinical signs of depression or somatisation.

This didn’t stop the first specialist I went to, a neurologist, insisting that I must must must be depressed, of course. I was a woman. With a toddler. Of course I was depressed! Just deluded and in denial, as hysterical women so often are. The abnormal blood tests and lack of clinical signs didn’t register in this simple equation: ovaries + fatigue = probably depression. Ovaries + fatigue + motherhood = certain depression.

Thankfully, I got past that, though not without a fair bit of righteous annoyance on my part. Depression would have been just fine by me as a diagnosis. I know how depression is treated. I know it can usually be managed, if not cured. I don’t feel a stigma about it; let’s face it, many, perhaps even most, of my close friends have had depression. But it’s a positive diagnosis, not a wastebasket one. Lesson one: no clinical signs of depression means no depression, people.

I found a GP with a clue, and stuck with her, so happily I’m not without competent, non-judgemental medical care. Sadly, not all people with CFS are in that position.

Discovering Spoon Theory

I first learned about spoon theory when I was poking around reading up about lupus. Christine Miserandino, a person with lupus, was trying to answer a question by her friend. The friend had asked her what it was like being sick – not about her symptoms, but about what it was like being her. Stuck for a metaphor, Christine grabbed all the spoons off the table, and explained that every day, she had a very limited number of spoons, unlike a healthy person who has a near-unlimited spoon supply. Each spoon stood for one chunk of activity. The friend started out with 12 spoons, and had to run through a day, giving up one spoon for every thing she did: including getting up, dressing, showering, and so on. The friend was down to half her spoons before she’d got to work in the morning – and the light dawned. It dawned for me, too.

Every day, every moment, is a tradeoff. Every piece of activity has to be a conscious choice. Normals never have to choose between cooking and cleaning up, between showering and playing with their kid. Never have to think ahead to the weekend, and say “I’m having lunch with a friend on Saturday, so I have to keep Sunday completely free to recover.” Spoons are always my first thought when planning out my life.

An example: Today I changed the bedding. That’s a fair chunk of spoons. I started planning it a couple of days ago, when I knew the bedsheets had to be changed. I have learned from experience that on a bedsheet-changing day, I’m not going to be able to get much other vertical time once essentials are accounted for (personal grooming, lunch, picking my kid up from school). I figured Friday would be a good day. We could have our weekly takeaway dinner, so I’d be able to steal the cooking spoons. And Friday Night is Movie Night for the Lad, so our evening will consist of hanging around on the bed, watching something with dinosaurs and munching popcorn, a low-spoon activity. I also checked forward to our Saturday plans: no excursions, so I can use up all my spoons on Friday instead of keeping some in reserve.

So I planned a couple of days in advance; I just changed the sheets; and now I’m horizontal. And wondering, just a little, how I’m going to get the energy to do school pickup today – maybe I’ll drive the block to school to save those couple of spoons for tonight? I’m not sure yet.

I used to spontaneously say “Oh, I’ll just quickly change the sheets now”, somewhere between getting home from work and going out for a night on the town. No more. Life has changed. It’s taken me two and a half years of being sick to get to this point of juggling my spoons relatively effectively. As recently as six or eight months ago, I was still on the push-crash roller-coaster, using up all my energy on one activity without thinking forward to the next, and spending days on end crashed out from not pacing thoughtfully.

Some people who have never been through this view the spoon-rationing as “giving in” to the illness. I guess these are the same people who subscribe to the contorted, fucked-up cognitive-behavioural causality model of CFS: they think that I’m sick because I’ve convinced myself that I’m sick, and that I have limits simply because I’m spending my hours and my days working within my limits. What they didn’t see was the many months I spent denying that I had limits, busting them, and paying out for it. What they are looking at now is survival, not surrender. I’m gleaning the positives from an unpleasant situation; I’m eking out a life both happy and worthwhile, from the boundaries I’m stuck with – just like anyone else on this planet does. I don’t need pity, but I do need consideration.

Two Things To Understand About Me

Before I leave Useful CFS Links, I want to drop you another link: the Open Letter to Those Without CFS/Fibro. A couple of these “Please understand”s really resonate with me:

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.

Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

Contemplating Disability: What Counts?

The line between “chronic illness” and “disability” is a blurry, wobbly, contested one. Many people seem to think that “disability” is about having a mobility impairment and using a visible mobility aid. People in wheelchairs “count” as disabled; people with invisible disabilities don’t. Some people consider “disability” to be something a person was born with, or acquired catastrophically and traumatically. Considering the idea that I’m disabled has been a difficult one for me. Though I’ve worked hard on combatting cultural devaluation and misunderstanding of disability and disabled people when it comes to others, for some reason turning the disability light on myself has been a challenging step. It took me nearly two years of being sick before I applied for a disabled parking permit, and I cried at the doctor’s appointment getting the parking medical form filled in. I might intellectually know that it’s not “surrender” to accept the D-word, but gosh, it feels like it. Why?

Passing

So I pass. Most of the time, I pass. I’ve used the parking permit maybe four times, because I don’t want people looking at me, staring because I’m not in a wheelchair, conspicuously inspecting my car looking for a placard, heckling me and asking what my diagnosis is, just as that TV current affairs show encouraged them to do last year.

I go to social events, and pass. Sometimes. There are some places I just can’t go, if there’s nowhere comfortable to sit or lie down, or if there’s no hard shade (I’m sun-sensitive). I find a chair or a picnic rug, and sit, and chat, and Don’t Mention The Illness. People I don’t know see me sitting still and asking friends or family to bring me a drink or fetch me something I need, and I worry about them wondering why I’m so imperious and lazy. But I work hard on not caring.

Passing is exhausting. So is disclosing, coming out. It all uses emotional energy – “Will they think I’m faking?” “What words will I use to explain?” “What if they don’t believe me?”

Invisible Accessibility for Invisible Disabilities

The first time I truly realised how clueless people are about disability and access was at a local Apple dealer. We needed to do a bit of paperwork, and I found myself standing at a desk, with the computer guy seated on their other side of the desk. I looked around for a chair, and couldn’t find one. I asked “Could I have a chair, please?”, and was told that they don’t have any chairs for customers. “I’m not feeling well,” I said, “Could I please have a chair while we do this paperwork?” and was again rebuffed. “This isn’t great disability access”, I tell the dealer. He looked at me as though I had two heads, and snapped, “Disabled people bring their own chairs.” I explained that not all people with disabilities use wheelchairs. I was then subjected to a lecture about how sometimes disability is all in people’s heads, and if only they would get out and about more, they wouldn’t have a problem. What an monumental arsehole.

I’ve spent the last nine years getting a Bachelor of Arts degree. The last two years I’ve done in off-campus mode, though my university doesn’t officially provide such a mode. This is thanks to several absolutely fantastic lecturers who were happy to work with me, discussing tutorial material by email, accepting emailed PDF assignments, allowing flexible deadlines. I thank those people deeply. And the lecturers who snarkily refused to contemplate flexible delivery can nick orf. I thank my wonderful partner, who fetched and carried the books, videos and paperthings that couldn’t be transferred electronically. I thank the librarian aide who helped me out with items for pickup, and I thank the Student Services Office, who somehow find their way around the convoluted university systems.

Most of the time.

Between going into off-campus mode, I spent a short while being sick but attending classes. This was before I got my ACROD permit, so I needed to apply for a university disability parking permit and library accessibility pass. The application system was so ridiculous as to be laughable, and my feedback about the system, as far as I know, was icily received and promptly ignored. I present it here for your amusement: How To Get A Uni Parking Permit, for People With Chronic Illnesses And Mobility Disabilities.

(Background information: the campus is fairly spread out, about a kilometre from end to end. This is taking place before I have a permit, so I can’t park close to the buildings and offices.) We started at Student Services, not too far from the south end of campus. Having made this appointment specifically to get the access passes, I thought I was going to just sign something and pick them up. I don’t have a huge number of spoons this day, and just driving to uni has been pretty tiring. But no. I meet the Disability Officer, and she says a couple of things, then says we need to go up to the Parking Office. At the north end of campus. “What?” I say. She says “We need to go up to the parking office.” “What the fuck?” I am tempted to reply, but I end up just doing the two-heads-stare. She twigs, and says, “Oh, you can drive, I’ll walk and meet you there.” So I make my way back to my car, and drive up to the Parking Office, try to find a space (paid only, for non permit holders), and go to the office. There’s no seating, no low counter; you must stand at a high counter to get served. Exhausted, I sit down on the floor while waiting, and bystanders start backing away from the crazy person. Getting up, when the time comes, is a struggle. The parking permit is sorted.

I’m wondering, at this point, what happens with the library permit. “Off we go”, she says, “We need to go to the library now.” I take a breath, steel myself, and drive back down to the library, in the middle of the campus. Parking is a fair way from the library entrance, and there is a large flight of stairs to get up. Ramp access to the library for non-permit-holders is around the other side of the huge building, and I don’t have the energy to walk around there. So I wait, again with no seating, outside the locked disability access entrance for the Officer. We meet, and go in. There’s a service counter on the library ground floor where they dispense disability access cards. You guessed it: no seating, and a high counter, standing room only. I ask for a chair, and the service person disinterestedly points me to a corner of the next room where there is a stack of chairs. I am in spoon deficit by now, and have a choice to make: do I stand at the counter, or do I go and get the freakin’ chair myself, so I can sit? I don’t even have the energy to go into an explanation of why there should be seating, and how completely inappropriate it is to tell someone at a DISABILITY SERVICE COUNTER to get their own damn chair. I get the chair, and slump down onto it. There is a wait, and eventually a card eventuates that gives me access to the locked elevator system in the library, and the library room with disability facilities in it, including various bits of accessibility equipment, comfy chairs, and a mattress to lie on.

I have a point, I think, to all this rambling, and that is: Stop and think. Use your brain. Encourage people around you to use theirs. Get past the wheelchair model of disability access. Just as people who use wheelchairs shouldn’t have to go to the back of a building and use a freight elevator, people with invisible disabilities need to be considered when planning buildings, access, and service provision. People with invisible disabilities should have equal access BY DEFAULT, and not have to spend their time constantly educating people about their illness in order to get through the day. Businesses need to do some basic staff training about the variety of invisible disabilities. Consider the whole range of somatic, sensory, and neurological issues and atypicalities, from CFS to cancer to dyslexia to deafness to autism to mental illnesses. Different people have different access needs; mine are really very simple, and start with access and seating. Don’t lock the elevator. Don’t make people walk the long way around to get to an elevator or escalator. Put in lots of chairs, benches, a low service counter for chairs and wheelchairs and little people, install an armchair in a corner for people to take a moment. This goes a long, long way to letting an ill person access your facilities.

Oh, and don’t tell them it’s all in their head.

©2013 FWD/Forward. All Rights Reserved.