What we need is more clear thinking. B asked: "What do I do -- just live with it?" He has pain. It got so bad that he had to go to the emergency room. The pain is in the chest, on the left side. It is very intense. He's had it for several years. It comes and goes for no clear reason. The pain typically lasts about twenty minutes, although it can be more. It is a very sharp intense pain, "like stabbing". There is a sensation that is also similar to a "cramp", like a "charley horse." He has had ECG tests, GI tests and finally me, the neurologist. He had nerve tests, MRI of the spine, and GI endoscopy. There is no very clear, specific diagnosis. It's just "chest pain".
He doesn't like the lack of a specific disease name. It makes him feel nervous. We don't know what he has, according to his way of thinking.
This is not clear thinking. At some level, we know nothing. We certainly know nothing when you get down to the real details. I tell my patients, sometimes, "You have peripheral neuropathy." That makes them somewhat happy. There is a real diagnosis! They ask "What is peripheral neuropathy?" But even so, they are happy because now we "know" what they have. In reality, we don't know very much. We know that the nerves are damaged, and that's about it. Then, there are many kinds of neuropathy. There are many causes. Much of the time, we don't find the cause. We end up saying "Chronic Idiopathic Axonal Polyneuropathy." That's what they have. That, in short, is nerve damage that we don't understand. This isn't very different than what B has. It just has a fancy name. I don't know what causes either one. And that is clear thinking.
So we know what we know. We know he has this type of pain with this type of intensity in this location occurring intermittently with this frequency. We know that. It's his experience. It could be given a name, but that really doesn't change anything. It doesn't change the reality or the experience or the nature of the problem. Yet we allow the existence of the diagnosis to alter our perceptions of the reality. The reality is improved somehow with the name.
This sort of thinking is allowing us to fool ourselves; it's allowing others to fool us. Since the presence of just a name changes our perception of reality it's very easy to change our perception of reality. We need to be careful about these things. I suppose I could take advantage of that. I could give people fancy names and then tell them what I know about what they have with an authoratative presentation. It would make them feel better, maybe. But I wonder if we're "dummying down" by refusing to accept the very high level of uncertainty that truly exists. We need to become comfortable with the reality of uncertainty. Everything is uncertain.
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"Every problem is a character building opportunity, and the more difficult it is, the greater the potential for building spiritual muscle and moral fiber."..Max Lucado
In my opinion, the key words are; "opportynity" and "potential".
To me they both relate to "Choice"
We choose to accept or deny the opportunity and accept or deny the potential for change and/or healing and acceptance.
Our choice is not always, perhaps rarely, on the conscious level.
"There is nothing constant in life, as we know it, except change.'..unknown
Logically then; our illness will change. Accepting that premis opens the door for us to "choose" to accept the opportunity and exercise the potential available to us; Controled change for the positive.
The words "acceptence", "choice","control and "exersise' are all active. We can choose to control; control of our attitude, which leads to control of our outlook and expectations.
Again, it's all about choice. We, as individuals, make the difference by our attitude about our illiness.
"The older we become the more "organ recitals" we give."..s.shaw
It doesn't have to be that way. Utilize positive affrimation.
"Acceptance", ""choice and "observations" instead of "complaints".
"Speak only that which you desire.".. Cicero
Doctor, can't an illness without a name cause additional symptoms such as lonliness, magnified fear, and the feeling of being crazy? Has a patient ever said, " Doc, I know these pains are real, I don't want you to think I am nuts or a hypochondriac (sp?). Maybe, if they have a diagnosis then these additional symptoms become alleviated becasue that means that someone else in the world has expereinced it. If this is what happens, then the reality is that having a name at least changes the experience if not the nature of the problem. As far as where the illness brings them, they do not have much choice but to expereince uncertainty. Now, if uncertainty could be a diagnosis and you had a treatment for that...
quote collector: I think the purpose of disease and death in general is to create growth. It's good to accept illness for its purpose in our life -- to take a spiritual approach. But for many people, that's not really an option. And we have to help all people, not only those who can respond to suffering as a challenge.
Brooke:
All illness causes loneliness for all patients. That is part of its nature. It makes us feel separated when we aren't well. There are support groups for people. It's amazing though, how often they don't help. There is this idea that if we don't have a precise diagnosis that a patient might be "hyponchondriacal". Many of them ask me "is it in my head?" or "is it from stress?" I suppose this adds a greater burden to the suffering. On the other hand, just because John has the same illness as I do, doesn't make the pain less. When the two of us get together, there is a high risk that we'll focus in on the pain, on the wallowing in self-pity.
"Labeling" of an illness might be one of those "Damned if you do, Damned if you don't" situations.
If one can replace the fear of the unknown with "curiousity" about a desease, and then work to learn; to know and grow, than the labeling can be a positive step. However, as my doctor advised, knowing to much of what the books say about the avaerage or general views of an illness can create a feeling of doom and gloom.
NOT knowing "Why" one is expeiencing the symptoms can cause undue stress, which in turn cause more symptoms etc. etc. The labeling of and "knowledge" about an illness can be the first step toward gaining acceptance of the "circumstance", which can bring a peace of sorts. If financial or legal corncers need to be addressed, plans for an uncertain future need to be arranged, "acceptance" is most important.
"Everyone knows they are going to die, but no one believes it.".. Morrie
For most people, I think, knowing [or labeling] is better than not knowing. It is an individual choice and must be very difficult for the doctor to determine which choice is better for the patient, and for the patient's care givers and/or family.
I choose to know; to prepare and to recognize the next step when it need be taken. Then, perhaps, one "May live all the days of your life"..Jonathan Swift
"Peace is seeing a sunset and knowing Who to thank"..unknow
Brooke & Quote Collector:
Yes, you are right in a large way about diagnoses. When there is one person who makes a claim, they may be crazy. When there are two, it may be "foix a deux". Now, there are three, so it might be insight.
I had a patient who came to me with at least a decade of "fibromyalgia" a tricky label of a disease without known cause or treatment (although recently Lyrica received approval for that indication). I correctly told her she had Syringomyelia (a spinal cord disease) which we confirmed with an MRI (incontravertible evidence). We changed her treatment which helped greatly. But even before that, her condition (not fibromyalgia) improved tremendously. Just because of a "label". I will say, though that the correct label is pretty important. I see a lot of wrong diagnoses. That, I think, hurts the patients.
I don't know about your illnesses; (it seems to me you both have some experience although I may have wrong assumptions since to me everyone is a patient)(this site but (if they exist) they might help you to see clearly. We needn't be about personal illnesses at this blog, that may detract from its purpose. And I think there are other, probably better, forums. So it's not that I'm asking about that. It just seems like experience insight that you guys may have.
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