When I became ill a year ago last May, I was met with two different reactions from friends, family and coworkers. The first reaction was one I will call "Game Over". The people who responded in this way withdrew from me as if I had the plague. One would have thought I had a highly infectious disease and that I apparently had a lot of nerve being out in public and exposing innocent people to this dreaded disease. The reaction was particularly painful for me.
The second reaction I encountered was from the "Don't Be A Whiner" contingent of the population. These people truly do not understand the nature of chronic illness, and they have no concept of what it is like to deal with pain and loss of function on a daily basis. They know if they have a headache, they take an aspirin, and the pain stops. They seem to think that those of us with chronic illnesses can do something similar.
I wonder how many of you have acquaintances, friends, or family who have suggested such "magic" cures as drinking wine vinegar or sleeping with a bar of hand soap in your bed. Sounds silly, but I have to admit I have been told to do these things by members of my own family.
We all have seen the commercials on TV that advertise a product that they promise will stop the pain of arthritis. The one I remember the most is the commercial advertising a product you just spray on your tongue and receive instant relief. I find this type of blatant manipulation of people in pain to be particularly offensive and sinister. The businesses advertising these products offer false hope to people who are desperate for pain relief, and they do it all in the pursuit of wealth.
What amazes me most, is the attitude of some health care professionals who tell patients they just need to "adjust". They don't want to hear about the patient's symptoms or pain. They want the patient to fit comfortably ( for them ) ina box so that they can prescribe the treatmen tappropriate for that "box". They don't want to treat the patient as an individual. This type of attitude robs patients of dignity and is a form of psychological abuse, in my humble of opinion. Unfortunately, I find this attitud efar too prevalent in the U.S. health care field.
Having a painful, chronic illness makes us feel vulnerable. It distorts our sense of well being because we don't know what our future holds. I have had to develop coping mechanisms to help me combat the negative aspects of feeling vulnerable.
The first coping tool I resorted to was humor. I laugh at myself....a lot! I don't care if other people don't get the joke. I don't care if they think I have lost my mind. I laugh at myself every chance I get, because it makes me feel better. Truth be known, I have a twisted sense of humor, anyway, and it matches my twisting joints. Oops! See what I mean about my sense of humor?!?
My second coping tool is to set weekly, or sometimes daily, goals for myself. For instance, I set a goal last week to remember to take any medication when I am supposed to take it. I met that goal, and I didn't miss any work last week. That gave me a sense of accomplishment, and we all need to feel a sense of accomplishment.
My third coping toos is more of an attitude than a tool. I had to change my feelings about asking others for help when I need it. I argued with myself. I went back and forth, back and forth. Finally, I came to realize that asking for help is not a character flaw or a sign of weakness. In fact, asking for help when you need it is a sign of strength, a sign of self-knowledge. Having a stiff upper lip and denying reality is not a virtue. Being able to accept the fact that you need help and being emotionally strong enough to ask for, and accept help, is a virtue.
My fourth coping tool is being completely honest with my doctors. They cannot help me if I am not forthcoming. I now ask my doctors every question I can think of to ask. The more knowledge I can acquire, the better I feel. I want to know as much as I can, so that I can make informed treatment decisions. I also want to know as much as I can, so that I can dump a doc who isn't helping me.
I cannot end this post withou mentioning depression. Depression is very common among peopel who have a chronic illness that causes pain. Depression can actually increase the pain and fatigue caused illness. It is important to let your doctor know if you are feeling depressed, because there are medications that can help. We all know we don't need anymore pain and fatigue!
Published On: April 16, 2011