(Sorry, it's Rammstein; I'm not proud)
A couple of weeks ago, when I wrote about the power of knowledge and chronic pain, several commenters raised the difficulty of getting other people to understand. I was kind of surprised that the comments took this turn, when that wasn't what I had been writing about. I was reminded of how much this sometimes matters to us.
I suppose I am fortunate in the fact that I don't often have to explain myself. This is partly my personal circumstances, partly the fact I have a reasonable sense, acquired over the years, of the minimum amount of information any given person or authority needs to know about my health. When the dentist looked at my notes and asked what the Dreaded Lurgy was, I said simply that I had a weak immune system and am very sensitive to the side-effects of any drugs; the dentist doesn't need to know about my pain or fatigue. (I got that bit right but, having been complimented on what good teeth I had, have since come to regret the line, "All the better to eat you with.")
Another point is that, to me, it doesn't really matter if people don't know what my life is like so long as they don't interfere with it. For a long time, I worried terribly about what other people might think, whether people would doubt symptoms they could see no evidence of (oh for a decent rash!). This tended to result in me either attempting to pass, to pretend I wasn't ill, or else giving people more information than they needed or wanted about my condition.
I suppose also, a part of me wanted sympathy; a part of me wanted Aaagh!!! tattooed across my forehead. But I generally find that when people feel sorry for me, they end up detracting from the things I do value about my existence. When we told everybody about our marriage, I received one card which said something along the lines that the sender hoped that one day my health would fully recover so that [...] and I could be truly happy together. Which jarred a little. Okay, so I have this one big stinky thing in my life, but the rest of it is fine. Honest - I am more than happy to be alive - please put that syringe down now, thanks all the same.
Anyway, there are a very small group of professionals who actually need to know what's going on with my medically and the effect that has on my functional capacities. Again, you learn the language to use when dealing with these people, the precise information they need, the gentle tack to take if they get the wrong end of the stick.
But nobody else who matters is going to question my account of things; getting it is an unspoken but entirely necessary condition of giving a shit about me.
Getting it isn't about knowledge or understanding, but simply respect. A friend doesn't need to know squat about my medical condition or feel sorry for me in any way. A friend doesn't need to have some psychic gauge of how I am feeling or how much pain I may be in. Getting it is simply recognising that I speak my truth; that if I say that I am experiencing X, cannot do Y, or that I need to do Z, then that is just the way it is.
After all, even if I was wrong - if I was faking, or exaggerating, or losing perspective on the situation - what could possibly be gained from an argument? People who really care about me are not going to start challenging me or applying pressure unless they have good reason to think I'm in real trouble, really not looking after myself, or putting myself in danger in some way. If they think I'm going to lie about or exploit my health situation, then they have a pretty low opinion of me to start with - or else have such tremendous difficulty dealing with illness that they've gone into denial. The latter does sometimes occur in families, of course, as family members can be terribly protective without being particularly groovy with the whole respect thing.
On the subject of families, I'll turn this around for quite a good example. I remember a bad day last summer when late in the afternoon, I was woken by a phonecall from Rosie. I don't always answer the phone on bad days, but if it wakes me up, I tend to answer it before I'm awake enough to consider doing otherwise. Here is a picture of my sister and the lovely Alexander (any excuse).
It was during Rosie's last few days at work before maternity leave and she was talking to me as she was driving home. She was suffering; the fatigue of pregnancy was taking it's toll, her shape and general discomfort was disturbing her sleep and she'd been struggling at work, standing in front of a class of moody teenagers trying to draw some harmony out of them. She was now driving along the motorway and was hoping to mow the lawn when she got home. But she was so knackered, she couldn't believe it.
It was completely natural for the thought that passed through my head to pass through my head, especially as I was feeling extraordinarily grim. However, I would have had to be a complete and utter arsehole to turn around and say, "Yeah, well I've spent the day in bed, in pretty terrific pain and there's very little hope of me mowing a lawn any time this decade."
Because I have no idea how other people are feeling and I certainly do not have a monopoly on feeling uncomfortable. Rosie was tired and achy, and she wasn't used to being tired and achy, and she'd had to stand up in front of high school students all day and drive home along the motorway; two things I would not be able to do even if I became completely well tomorrow. All I had to do was make it to the bathroom every time I needed to pee; I had had a much easier day, in many ways.
But I'm being honest about this because I do have to check myself. Sometimes it does annoy me when healthy people complain about how tired they are or how much they are suffering with something when they are able to carry on a relatively active life - just as it annoys me when relatively wealthy people complain about how impoverished they are whilst engaged in some project that my budget could never touch.
However, if I respect these people, then it is not my place to judge. I do not have their life, I do not have their experience. And if I care about someone, then it is my responsibility to try to understand how it might be for them and empathise with them; if I didn't have the imaginative powers to do so, I wouldn't have many friends whose life didn't closely resemble my own. Since I don't know anybody whose life closely resembles my own, I guess I wouldn't have any friends.
But I imagine this is the sort of thing which is happening when people cast doubt over chronic pain and illness; people become very precious about their own troubles. After all, the less that other people get by with, the more you ought to be making of what you have - people simply don't like the idea that they have it better than other people, even though all of us have it better than someone. Personally I think I have it better than most of the people I know in some ways, even if they have it better than me in other ways.
I guess people who cast doubt over our experience of chronic pain and illness haven't come to terms with this yet.
Oops, just noticed the time...
Well, I suppose we tend to define ourselves (to whatever extent) in terms of other people. We are, after all, social creatures.
Those close to us and fond of us will often happily accept what is happening. After all, they've seen us having trouble day after day. But those who our interactions are not based on "care" or "friendship" are less likely to make mental space for it. Employers and colleagues, for instance.
Like you say, I don't need sympathy and I don't need people to have a complete understanding of my condition, but it rankles when they say I lie.
I think, Goldfish, you are in danger here of making the old, old mistake of mixing up a need for sympathy and a need for empathy; and not purely empathy at that.
A characteristic of acquiring an impairment in adult life is that one has previously acquired a whole network of relationships - personal, emotional, professional - together with their responsibilities and duties.
Other people - friends, partners, colleagues, relations, children, parents - have settled into assumptions about one, particularly about what they need from one.
Post impairment this all gets changed, even if one outwardly seems not much different. One was reliable; one is no longer so. One was the support, the care- or strength-giver; now one needs the care and support oneself.
There are all sorts of complex unspoken negotiations going on all the time between adults, anyway, and illness, pain and its sequelae, impairment of any kind, has to be factored in.
It is often essential that other parties be made to understand the reality of the situation, if only in order to keep one's job or preserve a relationship or get help one needs and is entitled to.
That's been my experience anyway.
I think this speaks to the ease with which people discount the experiences of others when the reality of that experiences is discomfiting to them in some way.
I agree with Charles, but for me it's because people tend to think your behaviour towards them is based on their actions or the way you feel about them. They do not understand that the pain you are in is causing you to be emotionally different than before. When I recall the reaction to my illness before I had a diagnosis it ranged from disbelief to being put down as mentally/emotionally unstable. This made things even more frustrating.
Maybe I'll post another comment as well. I very much emphasise with Goldfish, except i find myself in the posititon of having been assessed and reassesed into oblivion.
How much do people ned to know about you?
When is enough enough, especially when the asessments are of no benefit at all to the person assessed?
Funny thing is once people have assessed almost evry aspect of your condition they then, I like to think on my behalf, go into aboslute complete denial that anything which has been assesed in you actually assessed.
Yes i need to post another comment to explain what I mean.
Nowadays in my old age I smile sweetly when some expert says "you don't drive do you?"
I reply "I am fine I am fine" and so return to my usual "impossible" daily life while all wournd me the world is in turmoil as to who i really am and what is not wrong with me.
So long as you enjoy life that's all that matters!
Mr xxx attended this interview with his wife, mmmmm. Subsequent to our meeting he provided detailed information from his own records regarding his interactions with Insurocorp and additional medical assessments. He described his history since first becoming aware of the effects of neurotoxicity, outlining the wide range of personal and economic challenges resulting from the variable and specialised nature of his injury. Mr xxx continues to regret the suffering -that inadequate medical assessments and case management have added to the difficulties resulting from his toxic exposure. He considers he is now accepting many aspects of his past and approaching his life in a more careful and successful manner. Mr xxxx considers maintaining a reasonable vocational expectation is essential, recalling times when his wish to challenge himself and the confidence of his employers have led him into risky situations.
Mr and Mrs xxxx are vigilant regarding the many likely materials and situations that lead to acute episodes of confusion, headache, irritability and fatigue. These episodes occur despite their vigilance, and these are accepted as inevitable if they are to lead a life that approaches a normal family pattern. Both are also familiar with the importance of continuing to problem solve and find successful approaches, having supported family members and pupils who have experienced a range of special health and educational needs. They talk with confidence and satisfaction of the effective strategies they have developed and their commitment to self-management. Positive family relationships and watching the success of their children provide important encouragement for this approach.
Mr xxxxx identifies fatigue management and maintaining his awareness of priorities through distractions, especially in social settings, as ongoing challenges he wishes to explore during this intervention.....................................................
Case manager flpproual (only required if plan differs from assessment findings or IRP]
Case Manager Signature:;
The information collected on this form -will only be useado fulfil the requirements of the Injury Prevention, Rehabilitation, and Compensation Act 2001. In the collection, use and storage of information, Insurcorp will at all times comply with the obligations of the Privacy Act 1993 and the Health Information Privacy Code 1994.
"yer right to the last paragraph!"
Meanwhile somewhere Insurocorp claimes I ahd rea dabout the injuries I sufer on the interent and by passing such information to them the diagnosis of my injuries had filtereed through the file tisd all my imgaination folks or ar they in de Nile?
Life is as life is!
The Importance of Being Earnest:
OK, so I posted this on my blog, thinking that I was overloading this one.
However on rereading your post I think it rather excemplafies what you were saying.
As for chronic pain!
Well either the part of my brain which should sense pain has been virtually wiped out, or having been exposed to such since birth I have adapted to it and therefore am mostly "lucky?" enuff to know no different,and so don't it seems feel pain when I should, which enjoyably confuses experts, especially Dentists even more.
Enjoy this real edited scan of a document by aperson trying to meet his "contractural requirements".
"While researching this claim "Chemical Sensitivity" I found that there is no evidence on file of the individual chemicals involved at the time that had caused the problem, however the claim was accepted on the basis that Mr Spring was –working for Pellex NZ, processing film, His GP notes indicated this, but also indicated, migraine and asthma (family members suffered asthma). The evidence of chemicals in particular gluieraldehyde/formaldehyde as being the culpnts was introduced to the claim file by Mr Spring in the form of printouts from Ihe internet in 1998. This information has then permeated through The claim via reports trom various specialis! who were provided the information by Case Managers in the course of supplying background material to the claim As a consequence the origional diagnosis "chemical sensitivity" has changed according To Mr and Mrs Spring to impairment and diffuse brain damage". This has been indicated in a xxx report mild. Since then Mrs Spring has commenced to call herself "supervisory caregiveri" to Rocky Spring? and is now signing documents on his behalf i.e. Medical Certificates, consent forms letters etc. This in turn is adding to the confusion on file and attempting to show that Mr Spring is brain damaged, (letter to Insurocorp Fraud Unit attached)
And you thought "Silkwood" was just a far fetched story and we is a clean green corruption free country!
Reminds me of A.A. Milne stories!
i'm sure my pain is nowhere near constant enough to be termed chronic. In some ways this makes life more difficult, because half the time i am genuinely fine; then the rest of the time when i'm not fine, the people around me struggle to understand. Possibly the mistake i have made, and which i would warn anyone else against making, is pretending to be more fine than i am. There's such a temptation to do this so as not to upset other people, and yet in the long term you just store up problems for yourself. I recently agreed to go to the pub with some mates even though i didnt feel anywhere near well enough, then at the end of the evening was unable to stand up and walk home unaided. Everyone was so perplexed: "But you've been fine all day!" Erm, no, i've been in horrible pain and really dizzy, i've just been sitting here smiling for the sake of you guys... So yes, there is a limit to what people need to know. But there is also a limit to what they don't need to know.
And I too, after only two cans of beer my Daughters recent 21st, spent the next two days in a near death experience still refuse to admit I lost count of the cans or exceeded my limit and had any form of Hangover!
Advantge of Brain Injury?
Economises on the amount of Alcohol needed to get a decent hangover.
I want to be more accepting of my condition, so that I don't push it, overdo it, try to do things that put me back in the realm of what people perceive to be normal. I struggle mainly with the limitations of other people's ability to use their imaginations - to imagine what it is like to be like this, which is different from empathy or sympathy. I also become a changed person when very fatigued or in pain, which those close to me have found very difficult. So HOW do you bridge the gap? And HOW do you arrive at a place of such acceptance and perception? Experience I guess.
Charles and Fluttertongue, I guess what you're talking about is those situations of change as opposed to the ongoing difficulties in living with chronic illness and pain. Although, as Seahorse points out, change doesn't stop taking place and the fluctuation of limitations is by far one of the most difficult things to negotiate, both personally and socially. I guess that is a slightly different, somewhat larger issue. I guess here I was focussing more on the acceptance of the mere fact we have limitations.
Rocky, your situation is terrible. Once again, it is my good fortune that I don't have to be constantly assessed. Just now I am a little nervous as I should soon get to meet my GP and despite my general confidence with this stuff, it does occur to me that he or she may never have met anybody with my condition, or never met anyone who is affected by this condition in the same way as I am, which is relatively severely.
However, when you have to face that kind of nonsense, the thing is to try and remember that it isn't personal; I would wager that nobody at the insurance company thinks you are lying or faking or anything, it is almost certainly the case that they simply don't wish to pay out.
It can be soul-destroying to have things written about you which attempt to discredit you as an honest person and cast doubt over the problems that you're having to work around on a daily basis. But it is all about money.
I don't know anything about the system in NZ, but I presume that there does come a point where you effectively win, and from that point on your brain injury will be legally recognised? I do hope so, and I hope that time arrives soon.
To "win" or not, legally involves vast sums of time, stress, and money and expert advice which insurocorp of course has endless access to.
The plight of injured in NZ can be somewhat deduced by visiting www.ACCforum.org where many "nasty" adversarial diffcult blighters place their opinions, me not being one!
We have decided that tis far better simply to carry on as best we can and face such crap whenever it arises and the rest of the time strive to find ways to "escape the system" Fortunately my Supervisory caregiver, who incidentally has been such for a lot longer than 1998 and was so ten years before I got around to marrying her has developed a very nice career which brings in an income which we could struggle to live on should things go really belly up. Role reversal her out working me a kept man? Actually it's called team work!
Don't weep for me, in my old age.
The adventures we have had have certainly, in hindsight given us some good laughs and made us we think, strong enough to survive almost anything.
We can say everything we have achieved has been our own doing anything else? well we pass that off as must have been despicable so and sos in a past life to deserve such in this Life is good, enjoy!
Sorry to overload your blog have posted a bit of stuff on mine such as it may be which hopefully may be helpful.
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