When discussing or dealing with this disease, attitudes like flies in summer are everywhere.
Those of us who are sick often have lousy attitudes, sometimes for good reason, often for not. We who are sick have an expectation that we should be looked after, cared for, catered for, pampered, nurtured and protected. Unfortunately, those involved in looking after us see thing in a somewhat different vein and our attitude may be one of our biggest issues when dealing with this disease.
Let me give you an example. I have been running and involved with support sites for a number of years now. During that time I have experienced disease both first hand but also as an observer. I have experienced and seen a lot of attitudes.
One thing that stands out in my mind is that men, by and large, don’t frequent support sites. They would rather let their long-suffering carers/wives/whoever do the donkey work of research, information gathering and meeting with others in the same boat.
Why is that? Personally I always felt my disease was mine! No one elses. If I was going to get better it would have to be down to me to educate, seek, learn, engage and fight this battle with every weapon at my disposal.
Know Thine Enemy was never truer. But most men are quite nonchalant enough to pass on this utmost responsibility to someone else, I suppose because they are too sick to be able to do it for themselves. Bad Attitude!
Then we have our esteemed medical professionals. If attitude was taught as part of medical training I guess things would be even worse that they are today. I hate to have to say it but amongst the biggest complaints I have heard over the years of dealing with this disease, the attitude (lousy) of Doctors must be right there at the top!
The first GI I had experience of was quite brutal in his manner towards me. “You’ve killed your liver. What do you expect me to do about it?” He would say while writing down prescriptions for more poisonous pills to ‘treat’ me with. Doctors act as Judge, Jury and often Executioner in their dealings with us. But why are they so high and mighty?
Why are they so quick to look down at us when clearly they have no means to treat us other than trotting out advice from the Book of How Not to be Sued. Doctors know nothing about treating this disease. In fact most patients really start going down hill with cirrhosis once the doctor visits start. The reason is quite simple. Lack of basic medical understanding on cirrhosis.
When this lack of knowledge is coupled with the level of alcoholism and drug abuse amongst the medical profession then you have an icon that must stay aloof in order to stay in some semblance of control. Bad Attitude!
Getting better is very much a mind thing. The power of positive thought, the willingness to learn, discover, explore and adapt is a huge driver in dealing with and even beating this disease. Good attitudes deliver great results!
Many patients, even though they know the medics have no cure for this disease, still go on blindly taking their ‘advice’ irrespective of how good or bad it is. They keep taking the poison pills without question, they still endure awful symptoms, awful treatment and awful attitudes BUT that is where the problem lies.
If it is accepted that the medics have no cure then it must also be logical that perhaps a cure lies elsewhere. Unfortunately too many people with this disease are unwilling to try anything different other than the poison pills they have grown accustomed to. Bad Attitude!
Perhaps the worst attitude of all comes from the wannabees. These are the people who wannabe sick. These are the people who have researched any and every possible symptom of liver disease and know, without question that they are dying, can attribute every twinge, itch, pain, ache or dubious bowel movement to cirrhosis while admitting that their docs can find nothing wrong with them.
These are people (mainly men in my experience) who flood the support sites with endless questions, endless symptoms and endless complaining about how ill they are, but their doctor doesn’t see it.
Of course it is the caregiver who have to put up with all this. It is the caregivers who have the toughest job to do, caring for us, while coupled with a ton of worry and anxiety. Thank heavens for their attitude. In the final analysis it is the only one that really makes a difference.
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