Pain and and It's Relation to Our Thinking Style
Knowledge versus Information
Do I know that I have POTS?
Knowledge can be defined as the state of absolute certainty that a piece of information is correct. It is not really possible for human beings to have this kind of certainty and for that reason, having 'knowledge' is a state of delusion. Therefore, I do not know that I have POTS or that POTS is the best description of the process happening in my body.
Information is thoughts and perception that may be applicable to something in reality or may be a fiction. Humans and other animals are able to use information to survive and enhance experience. I have information that POTS is one of the best descriptions I have as of yet about my condition. However, some of my other diagnoses, such as Ehlers-Danlos syndrome and Fibromyalgia, both of which can exhibit orthostatic intolerance, are also good descriptions.
Not-knowing is the natural state of the animal and of man.
In summary, there is no such thing as 'knowledge'. Humans do not have the ability to know. Like other animals, we can use and manipulate information without the need to know. This is why we can happily read novels which we know to be fiction and yet it makes sense and provides valid imputs to us though we know none of it is real and hence is not knowledge.
Believing in knowledge increases pain because all knowledge is a prison from which there is no escape and no cure while information on the other hand, can be used for it's usefulness and discarded when it is no longer useful.
When you believe that you 'know' you start to think that you 'know' there is no cure, you 'know' exercise will not help, you 'know' your diet does not contribute to the problem, and this 'knowledge' is harmful. Let's not subscribe to the myth of knowledge.
Diseases and conditions like POTS are pieces of information put together to allow us to reverse or treat a pathological process happening in the body. POTS is not a living and breathing entity which is attacking us. It will become clearer later the advantage of seeing things this way.
Belief versus Relief
Beliefs are are a catalogue of the informations a person holds as their knowledges or truths. Belief is the same kinda prison as knowledge.
The alternative is to have tentative beliefs or 'reliefs'. A 'relief' is a piece of information that one uses or favors while having no opinion that it is necessarily a superior or ultimately correct piece of information. One may believe it's more likely or simply say 'I'm going with this' as a strategy without claiming it is the 'right' or 'best' strategy, which is something one cannot know. Try eating vegetables to avoid killing animals and you will run into the problem that you don't know how much animal powered energy was used to get you that vegetable such that you may not know if it's actually decreasing animal cruelty, but it is a morally good thing to run with this motivation and you can work on refining the process and make it more and more likely you do no harm to animals for example by looking for locally grown vegetables such that less gas is used and hence fewer animals poisoned and habitats ruined.
Scientific information and hence medical information always falls into this category. They are not truths. It is tentative information which is used to help treat dis-ease, until we have better information and processes.
In summary, keep your mind open to possibilities associated with your illness, possibilities for improvement and advancement, rather than 'knowing' you cannot be cured or get better. If you have too many beliefs, you can have no relief.
Information Style and POTS, Dys, and Chronic Pain
Do I have POTS? Do you? What does it mean to have a disease? Since there's no known pathogen which is the cause, does it make sense to say you 'have' it. POTS for example, is a syndrome, meaning it is a description of what your body is doing, not what your body 'is' or 'has'. Here's the case for not believing you have POTS but rather seeing it as a description of a process your body is doing:
1. It is possible to be cured. If you believe you 'have' POTS, then according to the definition, there is no cure. However, in reality, no one knows if there is a cure or not. For at least some of us, I'm fairly sure some of us have been or will be cured. For others of us, treatment is not difficult. Basically anything that knocks the nervous system down a notch may work for those whose symptoms are more hyperadrenergic.
2. You don't have to be confused about which condition you have. If you believe in diseases as concrete things rather than man made ideas describing physical processes, you will quickly become confused trying to figure you which diagnosis is right, i. e. what disease you 'really' have. Some conditions have greater explanatory power than others however, the idea that the medical literature is so perfect as to make it clear which condition is causing which symptoms and able to exclude other possible conditions seamlessly is misguided. Medical classifications are not and never have been that good. A great attempt is made with ICD codes but this literature evolves in a sloppy, hit and miss way; it is not perfectly systematized by a supercomputer or even by a group of geniuses. It is a slow process open to error and correction of which we are all a part. We are all helping define what POTS is right now. We are not outside of the process, we are a part of it. Doctors studying us are learning what POTS is; all is not already known.
3. You can cut through a lot of confusion by concentrating on treatment rather than diagnosis.
Test after test just costs lots of money and leaves medical professionals even more confused than they were before the test. Rather than getting lots of tests, see what the treatments are for any suspected and diagnosed conditions because you will find that a lot of them are the same. For example, if a doctor is trying to figure out whether you have POTS or just anxiety, both conditions can be treated with beta blockers and benzodiazepines so prefer the treatment to more and more tests and don't have too many qualms over diagnosis and misdiagnosis. Medical professionals are doing the best they know how. They don't know everything that is in the literature and the literature itself does not know about you and your particular manifestation of disease. Treatment has to be personalized to you and the best way to do that is to get a doctor willing to do trials of relatively safe but effective medications that can be experimented with. Low doses of beta and alpha blockers for example, have few side effects for most people and can possibly help tremendously. Cardioselective beta-blockers such as nebivolol and bisoprolol have fewer side effects. Guanfacine may also be useful.
Many people get caught up in not wanting a mental health diagnosis as Generalized Anxiety Disorder is often misdiagnosed in someone with POTS. However, if we don't believe in diseases as perfect entities, we understand that our symptoms may also be covered by GAD and treatments for Generalized Anxiety may greatly reduce or cure orthostatic intolerance so there is no need to be overly concerned with avoiding a mental health diagnosis in the case of anxiety or depression (psychosis is a different story).
The take home message is do not let what you think you 'know' decrease your optimism and hope for a cure or advancement. The next treatment you try may be your cure or it may take many years of slowly graduated exercise training beginning in your bed; no one knows and hence no one can tell you your future. That is your say.
Thanks for reading,
DF Seldon, MS, NBCC