Personal Empowerment: “When the Doctors Don’t Know”
October 6, 2002
Medical Science does wondrous things today, sparing lives from suffering and loss. Joints can be replaced; hearts can have new valves; people can walk again after serious injuries that once would have left them unable to move. But the story is not all positive. Many new viruses have emerged; chronic illnesses plague all ages; babies are still being born with birth defects and AIDS; and countless cancers, heart attacks and strokes take terrible human tolls on both the victims and those who love them.
It is a marvel that medical science has come so far. But it is painful when what we are experiencing is not among the diseases than can be cured. We focus on wellness to do our parts in providing a balance to the futures we may fear. And we look to the medical profession for its wonders to continue to emerge.
Changes in the treatment of many illnesses have doctors scrambling to treat patients while trying to keep abreast of the newest and most appropriate treatments. The challenge is almost oppressive, and promises to continue to expand. Those who don’t keep abreast are left behind, while those who follow the latest changes may be risking using inadequately tested treatment responses. The situation is further challenged by medical communication systems too stressed to keep up, and threats of litigation as some seek opportunities to take advantage of the system. That is not to say that some legal responses are not appropriate. It is to say that those who use the legal system to exploit the medical system are creating challenges for everyone by tying up the system, causing escalating costs for malpractice insurance, and causing many talented people to look for other professions.
The role of a physician needs to be restored to the place of Healer. Those few physicians who exploit the system by seeking out opportunities to express their greed need to be controlled. But all those who are dedicated to eradicating human suffering and promoting life need to be supported emotionally by the public whom they serve.
There are also those patients whose symptoms cannot be explained within the categories used for diagnosis. For those who have gone a long time without a full and correct diagnosis, some thoughts are provided. Empowering oneself in this situation means educating oneself, educating one’s physicians about what is being experienced, and accepting that in some instances there are as yet few answers. But for some, finding the answers means the difference between health, and lack of health, and sometimes even death.
I recently learned that the twin sister of a friend of mine was diagnosed with Stage 4 Lymphoma. That means that the disease was not diagnosed at the time when there was the best opportunity for a positive outcome. Hopefully, this may still occur; but the chances are fewer due to delay. Her name is Margaret; and we add her to the Meditation this month in all of our thoughts and prayers. It is situations like this that cause us to pause and realize that although we have come far in diagnosis and treatment, we still have far to go.
There are those with illnesses like, for example, Lupus, that may take years to evolve to the point of diagnosis, leaving the patient and physician to deal with uncertainty. In my own case, I began seeing a Rheumatologist five years ago when my Internist had no answers. I have also seen other Internists and heard humiliating comments like, “everyone has aches and pains.” “just getting older”, “depression.” Instances of difficulty walking never seemed to occur in the physician’s office. When pain moved from place to place, some doctors didn’t believe. My pain, frustration and fear were met mainly with disbelief and the attitude that something must be wrong with my head. If the doctor couldn’t see it, it didn’t exist. What arrogance. Added to the fact that I looked OK, and most tests came back negative for whatever they looked for, it was assumed that nothing was really wrong. I needed to hear somebody say, “We know there’s something wrong, but we can’t find it.” At least I would have found validation.
One Rheumatologist is undaunted. She is wonderful, and listens. But after a point, no more answers have emerged. Now, five years since I started this journey with Specialists of every kind, I have received several diagnoses, but none completely explains all that I experience. Perhaps new symptoms will continue to emerge until the puzzle is complete. Or maybe they will go away completely. Until then, I try not to become depressed thinking that others think I’m imagining it, or that I am somehow to blame.
I’m writing this not because it is important that you know about me. I’m coping very well and have wonderful support. I’m writing to invite those with similar kinds of experiences to come forward and write back to me, or get involved in a solution. And for those of you who have the power to generate research in these lesser understood illnesses, we ask you to use your position to try to make a difference.
At a Fibromyalgia support group, some people talked about having been tested repeatedly to the point they’re not sure anyone believes them. Or, they have given up on the medical system and chosen to go with only alternative therapies. One person had done research years ago to learn about Fibromyalgia from studies in other countries. Many physicians do not yet believe this is a diagnosis, and blame the symptoms on depression. However, those who experience these symptoms would probably tell you that the depression is caused by living with pain, fatigue, and many other symptoms, and yet not being believed or relieved.
For those dealing with the problem of unidentified illness or lack of treatment options, and for those who love them, I offer the following ways to seek to become empowered:
Believe in yourself and don’t blame yourself. See those who belittle or ignore you as ignorant of the condition, and attempt to educate them.
Educate yourself. I have found that it is difficult for physicians to speak down to you when you confront them with facts.
Find others who have similar experiences. We can link through the web site of the International Institute For Human Empowerment, Inc. if you like. Please write to me if you are so inclined to communicate with others.
For whatever diagnoses you have received, learn all about the conditions. If your doctor doesn’t want you to read, think, and ask questions, consider looking for another doctor.
Remember that we are each 50% of the healing equation. Medical practitioners are the other 50%. They are busy with many conditions they face daily; we are busy with the ones we face.
Have compassion on yourself but never coddle yourself. You are a person with a condition, and no matter what it is, there are positive actions you can contribute for the benefit of yourself and others.
Don’t let inaction make you an invalid. Don’t feel sorry for yourself. Get active and let others know that research needs to be done. Why do some illnesses receive millions of dollars for research while others do not? For example, Fibromyalgia and Lupus cause some people to have to leave employment and thereby increase disability costs. With effective treatments, that might not be necessary.
Become an advocate for yourself and others with difficult to diagnose or incurable and chronic illnesses. There are lots of us. Find a way to bring attention to this situation.
Write to all of your elected leaders and urge more funding for research for these chronic and debilitating illnesses that have changed our lives and will change many more until we find some cures.
Be open in Meditation to what you can do. Answers come in thoughts, in simple new awarenesses, and something we hear or see that we would not have noticed before. Become aware that messages are always around us, mostly unheeded. Begin to live consciously.
In our meditation this month, let’s remember all those who are ill or injured. Let’s be open to new ways to heal. And let’s be a part of an enlightened advocacy for health.
For Margaret, and others, perhaps including ourselves, who have health challenges, may we open our hearts for healing. Let’s include in our prayers/meditation for health all of those for whom all of the Peace Meditation participants pray.
Please join us in the monthly International Peace Meditation held during the day and night of October 6, and on the first Sunday of every month. Ask your place of worship to be a part of the monthly peace meditation. Forward this meditation to all on your e-mail lists. Everyone, regardless of religious affiliation, is invited to participate. We do not know how many people meditate/pray with us as many countries have visited the web site. We do believe that prayer/meditation, or spiritual empowerment, is the foundation for the empowered life.
Thank you for participating with us. May our lives inspire others to positive action, and may we each become a part of the health solution.
Sue Kidd Shipe, President
International Institute For Human Empowerment, Inc.
P. O. Box 3920
Albany, New York 12203 USA