Wednesday, November 15, 2006

Illness Beliefs, Impairment, Empowerment and Guilt

I wanted to write about Illness Beliefs. This is the belief system a person develops to understand any given illness, why they are ill and what they might do to get better. For example, by the time we reach adulthood most of us will have an idea about what the common cold is and what impact our behaviour will have on any cold we might catch. We know it is an infectious condition, but not a serious one. We know that there’s no medication that can cure it, but it will be over shortly and there are a few things we can do to reduce the impact of symptoms; rest, eucalyptus, lemon, honey, camomile, Scotch etc.

Chronic illness is far more complicated. Its effects are far more dramatic but the long-term nature of the thing means that we have far more power over what happens to us. The ups and downs can be affected by the way we manage our diet, activity, adherence to treatment regimes and how we respond to relapses and remissions. And how we behave is determined by our illness beliefs; our understanding of how our condition works, how we got ill and the powers we have over our prognosis.

The reason I wanted to write about this is the way I have been thinking about recent improvements in my health and the way that my attitude has changed as a result. There is no doubt in my mind that illness beliefs can be very important; attitude can be either highly beneficial or highly detrimental, but analysis of them and their role is very very difficult.

It is a problem endlessly discussed in medicine; for example, some people respond to chronic illness or injury by retreating from, rather than altering, activities. This can do a lot of harm; people may step back from work, social activity, physical exercise and treatment regimes, resulting in a deterioration of both physical and mental health.

However, it is impossible to determine to what degree avoidance is perfectly sensible; at the very least, an ill person generally needs to reduce activity from normal levels before the symptoms of illness will do it for them. If a person is stable at the level of activity they partake in, this may mean that they are failing to push themselves, or it may mean that this individual has found the optimum balance. It is hard enough for us to consider these questions, let alone people on the outside. Wheelchair Dancer wrote something about this last month.

Another issue is that experience and belief are intrinsically linked. I have seen a number of formal clinical studies about different conditions, concluding that attitude effects prognosis, since people who were more severely ill tended to be more pessimistic about their health. But correlation and causation are not the same thing; the way such data is usually collected, it could just as easily be that greater severity of illness brings about increased pessimism.

This bears out in my own recent experience; just now I am very much more optimistic about my health - including the power I have to effect change in my health - than this time last year when I was heading steadily downhill.

But perhaps most importantly, the only unhelpful illness beliefs that are ever discussed by the medical community are those where a sick person feels they have less control than they really do. That a patient has the wrong attitude is the ultimate get-out clause for any frustrated physician, therapist or even the researcher whose hypothesis failed. Personally, I have always been very fortunate with doctors and the like, but I have still reached a position where I have felt wholly responsible for my health and as such, pretty wretched about the state I have managed to get myself into.

A recent post by Ballastexistenz really caused me to examine this closely, because I have always thought this stuff limited to chronic illness with the potential for remission or the sort of injury which may be followed by some degree of rehabilitation.

Ballastexistenz describes thought processes very close to my own, but she is not sick, she has autism. Autism is neurodevelopmental; as I understand it, her attitude and that of those around her may impact on the level of disability she experiences, but cannot possibly effect functional impairment (apologies for discussing you in the third person, should you be reading this).

And yet what she described was so very familiar that it had me in tears. I guess a lot that I wrote about loci of control relates to the way my own mind works at times, but the fact someone with autism felt this way made me just how ridiculous these ideas are. Because impairment is to do with a random event or series of events; people may make themselves more or less vulnerable to acquiring impairment or having disabled children, but nobody is immune. And most of the factors effecting the degree to which we are impaired are simply down to luck.

Unfortunately, in my case, I know there are things I can do which might effect my level of impairment. I know I have effectively brought about relapse by running myself into the ground, and contributed to a degree of remission through being careful, pacing, exercise and so on. Plenty of random events in the mix as well, but that's besides the point. In one sense, I dearly wish I had no choices, to know that every little push is a gamble. I could get used to the one stable level of health; I would know what I had to work with all the time.

In another sense, it is very empowering to feel that the choices I make can have a positive, as well as a preventative effect on my health. I can't help feeling slightly smug about the fact I'm doing better and my muscles are getting stronger just now.

Hmm. Not really sure what my point was, but I wanted to get some of this out of my head. Everything is still going well in Suffolk...


Anonymous said...

I completely agree with the idea that how we understand our illness, whatever it maybe, and how we cope with it affects the outcome....
Nice post...:)

ben said...

thanks. if i think about what might happen too much, it becomes self-fulfilling prophecy. if i forget about my health, i run myself into the ground.

it's funny like that, and i realize that i'm perhaps not the most compliant patient ever, but i'm fiercely committed to the idea that of all the people on earth, I'm the best informed and able to make choices about my health. i'll take advice and such, but when it comes down to it...i'd rather trust my own knowledge of how to negotiate disability.

and i do feel that guilt for having taken too many risks, but it fades most of the time when i realize what all i did get done.

Maddy said...

Couldn't resist the writer name of 'Goldfish.' I know nothing of diets, but I swear that one of my son's would have expired if it wasn't for Pepperidge Farm. But what do I know anyway.

Mary said...

The trouble is that life Doesn't Stop while one goes through the adjustment process (for those of us with adult onset illnesses/impairments).

You may wish to eat wonderful organic veg and soya milk, but until your benefits are sorted out, it's tesco value beans on tesco value toast and liking it.

You may wish to pace your daytime activities, but doctors' appointments and family events will keep on happening to throw it off.

You may wish to take it easy, but the dishes will not do themselves.

The trouble is, the "journey" of getting to a point where you can balance everything within your new parameters and actually start doing what is best for you, takes place alongside a hurly-burly of crisis-management and fighting fires to keep your head above water.