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".
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