Friday, March 4, 2005

Musings on chronic pain and society treatment of sufferers

I've been told several times this week (with variations of wording but the exact same meaning): "You walk to uni, and you are back tutoring, therefore you must be better." How come the vast majority of people do not realise that chronic typically means "will not recover or get better". I mean, yes, I'm dealing with the pain a lot better than I used to, with more natural means and with less medication, but has the amount of pain changed? No. I have a adenomyoma that is continually growing, and it is pressing into my bowel. I do not get a break from pain. Nor do I get a break from the fatigue and other secondary symptoms that the pain causes. To get rid of the adenomyoma I need a full hysterectomy, and I'm not ready to do that and enter menopause (again).

I was insulted recently by email, by a first year student who stated that I was discriminating against them because they were working (they wanted a completely new tutorial opened on a Friday, just for them, which was impossible because the tute material needed to be covered before the pracs). This student said that it was discriminatory because I was getting special treatment (having not completed honours due to medical reasons), but because I was tutoring, it was obvious that I was not completing honours due to work reasons (not medical). He got this information by visiting my non-work home-page, and despite the medical information on that page, surmised that I was only having difficult with my course because I was working.

Note that my first reply to his request was to simply say that "Policy says that if you are enrolled in a course, you should be able to attend scheduled classes. Work commitments must be scheduled around study commitments. I can arrange an early or late tutorial time on a Monday if that makes it easier to arrange with your employer." - this was what prompted the rude email to me saying I was discriminating against him.

I politely passed the complaint on to my superior (who deals with timetabling classes, and not simply timetable reorganising in the event of clashes), who repeated what I said, and commented that the student's complaint about me was "inappropriate and unprofessional", and that the university has a separate policy for dealing with medical problems, and that my medical problems were none of their business. The student apologised for 'having escalated the complaint' and blamed my use of 'scary legal terms like rules and law' (although, I only used the word 'policy').

I'm still waiting for a personal apology (which I think is not forthcoming), and am desperately hoping this student is not in one of the classes I am teaching.

I am completely sick and tired of the sentiment that if you can work (teach), then you should be able to study. They require a completely different set of skills. Studying at an honours level requires a huge amount of concentration - much of the coursework and thesis work is completely new, not just to the student, but in the field. You need to be able to concentrate for long stretches and think clearly enough to reason your way through obstacles or arguments against your approach. Actually doing programming also requires clear thinking and extended periods of concentration.

Teaching subjects that I have taught upwards of 5 times before, requires empathy (to see when the students understand or need explanations in a different way), but not as much in the way of extended concentration or reasoning skills. I could probably teach the entire content of CSE1303 Part A blindfolded, without any lecture notes, and probably with my hands tied behind my back. I can certainly teach while dealing with chronic pain and fatigue. But I cannot study through the pain and the associated mental fog.

Chronic pain... it's invisible. Because it is not in society's face means that it is never considered, never allowed for. Sufferers are often told that they imagine it. For years my family accused me of being a hypochondriac, even when every visit to the doc showed I was acutely sick each time (13 UTIs each year should have made someone worry about the cause, let alone the many bouts of bronchitis each year, migraines, sciatic pain, period pain, and dysmennoreah). So right from the start of childhood I have been ill, but did not even receive help from my family, let alone much consideration at school of all levels, or later at work (until I raised an OHS case for stupidly designed doors - which were impossible to use if you were disabled).

I read recently that a respected doctor in the field of migraines/headaches and head trauma had commented publicly (in a newspaper), that the majority of the 'migraine' sufferers that turned up to the emergency room, were only there to get their next hit. In other words, he did not consider that they were there because of the pain, but because they were 'junkies'. Even specialists do not take chronic pain seriously, let alone treat the sufferers with respect!

It's all very distressing, and there is nothing one 'lowly' sufferer can do about it. The most hurtful insult I have ever received regarding the diseases that I suffer from, was from a Christian minister who vehemently stated that because I don't have faith in Jesus (and God), and didn't follow their religion, that my health conditions were my punishment. Oh yes, and he also said that anyone who did not believe, was automatically condemned to hell and in league with the devil. If anything, that family pushed me further away from their faith than anything else I had come across, and they truly believed that by saying those things, they would get me to 'convert'.

Please don't take insult if you are religious in any way. I quite accept and encourage beliefs where they are not used to persecute others, which is how the majority of Christians act. I take offense to those who actively try to convert people to their faith, and condemn anyone not of their faith, either through actions, verbally or even just in their thoughts. Most religions value tolerance above most other virtues, and yet most of the problems in this world are caused by intolerance (especially of other religions)! I wonder if the world would be better without religion at all. I have this nagging feeling that the human race would just find something else to fight as bitterly about. Religion is useful for many people - it helps them get through the day, provides a valuable sense of community, and many wondrous things are done in the name of religion. But so many horrors are perpetrated for the same cause.

And now I think I'm ranted out for the day...

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