I went to this talk because I have chronic health conditions that affect my mobility and energy levels, and I am a caregiver for my mother, who has Alzheimers. I’m a Buddhist and my study of Buddhism has helped me work through grieving over these things and building a life around them, and I wanted to hear a talk that specifically addressed how Buddhism can help a person deal with chronic illness. I figured that I already knew a lot of what she was going to say, but I thought I’d learn a few things and find out that I’m already doing a lot of what there is to do, and that would help me feel more confident.

beautyofgrey at The Truth That Came Before (DW): On invisible illnesses and harmful judgment

Our illness is invisible. At first, even I did not want to see our illness. I wrote it off as “discipline problems” or “unresolved anger” and resolved to become a better disciplinarian, better parent, and to slowly count to ten. I assumed it might be due to changes in our life. Later, doctors did not want to see our illness. Everyone had a healthy weight and height. They wrote it off as “difficult phases” and assumed that the problem resided at home. They asked us to wait a year or two before we considered whether the chaos, aggression, and emotional stress weren’t just tricks before our eyes. Our illness was invisible, because we were not “that bad off”.

kankurette at The Hidden Village of Aspergers: Happy Mental Health Day. If “happy” is an appropriate adjective

I’d always been a melancholy kid. Think Marvin, Eeyore, Cassandra, the Ides of March. I just went along with it. In my teenage years, I had moments where I was suicidal, and I started self-harming at 14, but I just put it down to teenage angst. Depression wasn’t an illess, I believed. It couldn’t happen to me. Even though my mum turned into a wreck after my dad died and spent days in bed, even though she had panic attacks in front of us and seemed to be more temperamental and headachey than usual, even though the doctor gave her pills to take, I just thought she was sad; I didn’t realise she was ill.

K__ at Feminists with FSD: Interesting posts, some time in October

I have a feeling we’re probably going to see another spike in coverage about Flibanserin, (I’m thinking certain feminist websites are more likely to cover it than others, and maybe some op-ed pieces in mainstream newspapers, as well as others) and when we do see it, I can guarantee you it’s going to get real ugly, real fast. Everyone, get your bingo boards ready to go if you’ll be doing any reading on the matter. If you see any new and bizarre arguments about FSD and why no woman, anywhere, ever, needs medication for sexual desire problems ever, in comment sections to the inevitable anti-Flibanserin posts, let me know; we may have to produce a version 2.0 if we keep running into the same old shit again and again.

Lisa at Sociological Images: What is Intelligence?

We often think that intelligence is somehow “innate,” as if we are born with a certain IQ that is more or less inflexible.  These scores suggest, however, that our potential for abstract thought, though it may be located in the biological matter of the brain, is actually quite malleable.

(Note: For a further discussion of the concept of “intelligence” and its history, see kaninchenzero’s AWP post on Intelligence.)

©2012 FWD/Forward. All Rights Reserved.

And what I have realised is that there is a sixth component to zvi‘s rules, and that is that complaining about and calling out what you do not like does help, slowly, painfully, get rid of it.

Every time I see friends who make locked posts about fic that Others them, that writes appropriatively and ignorantly and dismissively and condescendingly and fetishistically about their identities, I think — there needs to be a space where this can be said.

damned_colonial (DW): Hurt/comfort and the real world [warning: derailing in comments]

Writing a short ficlet in which someone who has been abused/injured/disabled/etc is “comforted” and feels better seldom bears much relation to the reality of abuse/injury/disability/etc. Which, OK, we write a lot of unrealistic things. The problem with this one is that the idea of hurts being easily cured/comforted is one that also exists in the real world and harms real people. Almost anyone with a real-world, serious “hurt” has had people dismiss and belittle their experience on the assumption that they “should be over it by now” or that “if you just did X” the problem would go away. People are often treated badly or denied care on these grounds.

Pauline W. Chen, M.D. (New York Times): Why Patients Aren’t Getting the Shingles Vaccine

“Shingles vaccination has become a disparity issue,” Dr. Hurley added. “It’s great that this vaccine was developed and could potentially prevent a very severe disease. But we have to have a reimbursement process that coincides with these interventions. Just making these vaccines doesn’t mean that they will have a public health impact.”

Trine Tsouderos (Chicago Tribune/L.A. Times): The push and pull over a chronic fatigue syndrome study

Nine months later, the joyous mood has soured. Five research teams trying to confirm the finding have reported in journals or at conferences that they could not find the retrovirus, known as XMRV, in patients diagnosed with chronic fatigue syndrome, casting grave doubts on the connection.

Kjerstin Johnson at Bitch Magazine’s Sm{art} blog: Riva Lehrer’s body of art

To Lehrer, who has spina bifida, “Disability and art are natural partners. In order to have a good life with a disability, you have to learn to re-invent your world almost hour by hour. You discover ways to re-imagine everything, and how not to take the average answers to everyday questions…”

©2012 FWD/Forward. All Rights Reserved.

New Scientist this week published an interview with infamous psychiatrist Simon Wessely. Wessely persists in believing, in the face of all the evidence, that Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME)* is a uniquely UK/American psychological condition caused by internet-triggered “faulty illness beliefs”.

Here’s a bit. Read the rest at the link.

Mind over body?

Can people think themselves sick? This is what psychiatrist Simon Wessely explores. His research into the causes of conditions like chronic fatigue syndrome and Gulf war syndrome has led to hate mail, yet far from dismissing these illnesses as imaginary, Wessely has spent his career developing treatments for them. Clare Wilson asks what it’s like to be disliked by people you’re trying to help.

How might most of us experience the effects of the mind on the body?

In an average week you probably experience numerous examples of how what’s going on around you affects your subjective health. Most people instinctively know that when bad things happen, they affect your body. You can’t sleep, you feel anxious, you’ve got butterflies in your stomach… you feel awful.

When does that turn into an illness?

Such symptoms only become a problem when people get trapped in excessively narrow explanations for illness – when they exclude any broader consideration of the many reasons why we feel the way we do. This is where the internet can do real harm. And sometimes people fall into the hands of charlatans who give them bogus explanations. [...]

What about those people who have such severe CFS they are bedridden?

In that kind of disability, psychological factors are important and I don’t care how unpopular that statement makes me. We also have to consider what those years of inactivity have done to their muscles. People know that if you break your leg, when you take the plaster off there’s nothing much left. If you’ve been in a wheelchair for some years, the laws of physiology haven’t stopped.

Your most cited paper claims that conditions such as CFS, irritable bowel syndrome and fibromyalgia are all the same illness.

If you ask people with irritable bowel syndrome whether they suffer from fatigue, they all say yes. It’s just gastroenterologists don’t ask that question. Likewise, if you talk to someone with CFS, you find that nearly all of them have gut problems. If you systematically interview people with these illnesses, you find that a big proportion of these so-called discrete syndromes have a large overlap with the others. You have to think that we have got the classifications wrong.

So do you think these syndrome labels are arbitrary?

Each country has different syndromes. They don’t have CFS in France; they have a strange one, spasmophilia, where a person has unexplained convulsions. In Sweden they have dental amalgam syndrome, which hasn’t really caught on here. In Germany they believe low blood pressure is bad.

Where does Gulf war syndrome fit in?

I’d read about people with Gulf war syndrome in newspapers. They looked incredibly like my CFS patients except they were in uniform. [...]

Wessely gets taken apart in the comments.

Unfortunately, many doctors believe him. Other folk do, too, because of the credulity lent his theories by his medical degree. No matter how much they’re debunked. No matter how much the people right in front of their faces talk about their own experience.

It’s demon possession, hysteria, multiple sclerosis, and hyperemesis gravidarum all over again.

Why can they not see this? Because they don’t want to admit that they don’t know everything, perhaps? I think that’s a component, but there’s more to it.

Here’s my current take: These psychologisers are believed, because they are the people who are reinforcing existing prejudice. I think that popular conceptions of CFS are heavily gendered: If a disease is suffered more often by women, we all know they’re doing it to themselves, don’t we? And if people – especially women – have diseases we don’t understand, they must be to blame somehow. We’re not very comfortable with uncertainty, we don’t like “shit happens” as an explanation.

We seek to blame, and who better to blame that the people who we see at the centre of the problem – women with disabilities? The shadows of victim-blaming rear their ugly heads again and again and again within every axis of oppression, and those shadows are multiplied at the intersections**.

And so, people with disabilities are abused – medically, socially, financially, and psychologically. Every day. Because of people like Wessely who are “just trying to help”.

I just can’t write much on this. It sends me into white-hot. Over to you.

* Note here that I’m not talking about “I’ve been feeling a tad under the weather” chronic-fatigue. I’m talking about the full-blown syndrome, a distinct entity which is not burnout or overwork or stress or vitamin deficiency or fat or lack of exercise.

** Yes, I did just re-watch Silence in the Library and Forest of the Dead; why do you ask?

©2012 FWD/Forward. All Rights Reserved.

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
-------------------------------------------------------------------------------

©2012 FWD/Forward. All Rights Reserved.

I was having a discussion about ambient intimacy in a couple of elsewheres, where I tried (and possibly failed) to say that what is so reviled by opinion editors and other meatsnobs can be useful in all sorts of ways.

I like the little slices of life on my friends’ livejournals, however trivial, because I just can’t access this sort of chatter in my meatspace. Yes, I want to know how your daughter went on the first day of school, that you cooked a delicious recipe for dinner, that the eggplants are flowering, how your doctor visit was, what you thought of Big Love last night, that work is pissing you off, where you spent election day, or that the storm didn’t blow your roof off.

The internet is the virtual watercooler (or coffeehouse, or playgroup, or pub) for people like me, isolated due to disability. And I’m fed up with able-bodied folk slamming electronic community as a meaningless half-life. I’m sick of internet use being constructed as a signifier of a person as a pathetic loser worthy of mockery. And I’m over ignorant pundits reviling the rise in electronic community as The End of the World as We Know It, a one-way highway to the inevitable disengaged, apolitical fragmentation of society.

I think there might be an analogy to be drawn here with physical assistive devices. People who use wheelchairs, for example, use wheelchairs. They get around in them. Wheelchairs are useful, value-neutral objects. People are not “bound” to them; they’re not “condemned” to life in a wheelchair. The use of a wheelchair doesn’t mark a person as either a sinister or pitiable caricature. And above all, people are not synonymous with their wheelchairs. They’re people who use a mobility device, a tool.

The internet may be many things, but it is also my social assistive device. And that’s not tragic, or threatening, or worthy of scorn. It just is.

©2012 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.

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