Living Well and The Right to Die: Invisible Illness

Living Well and The Right to Die: Invisible Illness
© 2009 Misha BearWoman Metzler (all rights reserved)

"But you look fine."

*sigh*

Sometimes I respond: "Thanks." Sometimes I respond with a smile, "Well, at least something is working right." What is it about illness that falls under the category, "I’ll believe it when I see it." Must suffering be unmistakably obvious in order for it to be validated? Often it seems so.

Say you have something like (pick one from the following list)(1):

· Hypothyroid(2)
· Adrenal insufficiency (hypoadrenia)(3)
· Impaired detoxification capacity(4)
· Impaired cognition(5)
· Other neurological deficits(6)
· Deficits in all but one of the known brain neurotransmitters(7)
· Angina pectoris (chronic)(8)
· Fibromyalgia (muscle and joint pain not related to exertion)(9)
· Chronic Fatigue Syndrome(10)
· Multiple Chemical Sensitivity Syndrome (MCS)(11)
· Lyme disease, late stage(12)
· Nutritional imbalances(13)
· Body temperature dysregulation(14)
· Blood sugar dysregulation(15)
· Sun sensitivity, as a part of:(16)
· Porphyria (dual)(17)
· Sensitivities to sound, light, or other sensory input(18)

If you were out in public, do you think the average passer by would notice any of these things about you? Perhaps if you had severe sun sensitivity you would be wearing special SPF(19) clothing(20) made by Sun Precautions®. Most of them look like normal clothes (on purpose). Do you think anyone would notice the modest brand name label, much less understand what it means? Likely only if they were an "insider." The same is true with many of the other conditions listed above. Some of the signs are only obvious to the educated observer.

Some signs (such as special clothing) are more obvious to those with a more cursory understanding, while others are not as obvious. These signs, invisible to most, include behaviors. If you did notice it, what would you think about a person who appears to avoid physical contact with other people, who actively shuns and pulls back from physical overtures? If someone were talking in a fast, animated manner, would you clue in to the fact they may be experiencing a neurological kindling(21) event? If they were lethargic and subdued, possibly even slightly slurring their words, would you assume they were drunk or "on something?" (On this last, most people who notice and guess assume low blood sugar to be involved.) If you were standing next to someone while waiting for an elevator, the car came, you both got in; the other person got a funny look on their face while turning their head away from the extant occupant(s), brought their hand to their face, and said, "I’ll take the next one," while exiting rapidly, what might you wonder about them?

Now imagine you observed these behaviors in the same person over time(22). Repeatedly. Would you begin to wonder about the status of their mental health? Would you even consider that adaptations to a physical condition were the basis for such behaviors?

Hmm. I obviously spent more time talking about my individual situation here, and less time talking about the general nature of invisible illness. I suppose that means I’ll have to write another essay on the topic. Either that, or I must be suffering from Narcissistic Personality Disorder. I mean, everything does revolve around me and my illness, after all.

2009 May 02 - 13


END NOTES

(1) I live with all these conditions. This is a partial list of my diagnoses.

(2) See descriptions at locations such as endocrine web, the Mayo Clinic, or Wikipedia.

(3) See descriptions at locations such as Wikipedia or suite101.com and the article Hypoadrenia: a causative factor in MCS and impaired enzymatic detoxification in the Townsend Letter for Doctors and Patients Archives.

(4) Impaired detoxification capacity as it relates to Lyme Disease (a blog post). A test for this condition (html version, PDF version). An article on The Detoxification Enzyme Systems.

(5) Impaired cognition: This could include many things, including difficulty retrieving words (especially abstract concepts), analyzing/evaluating or comprehending things, relatively slow recognition of dangerous situations. In my case, one of the ways it exhibits is that it can take me several times what it used to (pre-disability) to accomplish the same intellectual task. Some of the higher level, so-called "executive functions" are no longer accessible to me. Fortunately, I have been accessing enough of them enough of the time to undertake writing this series of essays.

It is both a pleasure and a pain when someone says to me, "But you sound so intelligent." They can’t see that sometimes I am running on fumes and habit, or when my self-checker is offline. Or that I can spout off detailed information on selected technical topics only because of years of repetition and a high survival stake? Isn’t vocabulary wonderful?

(6) Other neurological deficits: Oh, on bad days these can include tripping over air, falling into walls and doorways, spontaneously losing my grip on objects that then fall to the floor. On those kinds of days, you are unlikely to see me out in public. Other, more invisible deficits include short-term memory formation failure, impaired facial recognition, and the inability to balance my checkbook. Fortunately, these deficits vary, so I can still get my checkbook balanced, even if it takes time before the bank’s statements finally agree with my records.

(7) According to Wikipedia, approximately ten neurotransmitters are known. These include Acetylcholine (ACh); the monoamines norepinephrine (NE), dopamine (DA), serotonin (5-HT), melatonin, and histamine; the amino acids glutamate, gamma aminobutyric acid (GABA), aspartate, glycine; and the purines adenosine, ATP, GTP, and their derivatives. A screening at a recent doctor’s appoint revealed that I am deficient in all major neurotransmitters except serotonin. This may be due to my regular use of a prescription SSRI (Selective Serotonin Reuptake Inhibitor) antidepressant medication (in my case, Prozac).

(8) Angina pectoris (chronic): Here is what Wikipedia has to say about angina pectoris. What I experience is like that, except that (1) it can last 24 hours continuously, with varying degrees of expression, (2) use of nitroglycerin (even the allowed three doses in a row) have little effect upon it, and (3) an exercise stress test and a nuclear stress test both showed "no significant coronary artery disease."

This could mean I have a level of coronary artery disease that is below the level of detection. However, my chest pain could be entirely a nervous (rather than circulatory) system phenomenon cause by porphyria. I am intrigued by some new research that could explain my (angina and some other) symptoms due to defects in the mitrochondria and the energy production system. I am following details on this as a friend is researching it for her own needs.

(9) What Wikipedia has to say about fibromyalgia.

(10) What Wikipedia has to say about Chronic Fatigue Syndrome (CFS). My onset began in the typical fashion, after experiencing flu-like symptoms in the mid-80’s (approximately fall 1984). It did not become debilitating until an occupational chemical exposure in early 1994. I was diagnosed with Mononucleosis. Several months of antibiotic treatment only reduced my blood test results in a limited way. Finally, my doctor took me off the antibiotics. This marked the beginning of an increasing collection of symptoms for which my doctor prescribed standard pharmaceuticals. The mainstream treatments were of limited if any benefit, while side effects were unacceptable (often worse than the presenting symptom). I would learn the limitations of modern medical science as I was more and more often told, "You’ll have to learn to live with it."

(11) What Wikipedia has to say about Multiple Chemical Sensitivity Syndrome (MCS). This article states that "Blinded trials have shown that MCS patients do not actually react to chemicals," which to my understanding is not true in the complete sense. Such research that has been done on this condition, the recognition and validation of which could represent significant legal and financial liability issues for many industries, has been refused publication in mainstream medical journals. Hence, "plausible deniability."

As far as physicians who are paid by the chemical industry to defend them and their positions in toxic tort litigation, one knows who butters their bread. And when such physicians are allowed to write and publish medical articles that become the definitive public statement on the issue for decades, one wonders where the public good lies in such a situation. And where the oath "to do no harm" has gone.

(12) What Wikipedia has to say about Lyme disease.

(13) Nutritional imbalances can be of many kinds. Many of these can lead to or exacerbate other conditions, such as osteoporitis (which I fortunately do not have!).

(14) Body temperature dysregulation: This is an odd one. Sometimes it is similar to what menopausal women describe as their hot flashes. At times I feel cold inside while I am sweating (but not running a fever; I’ve checked). That’s when I think my body is insane.

(15) Blood sugar dysregulation. What I experience is generally reactive hypoglycemia. There is also some odd stuff that goes on after some chemical exposures in which my porphyria is apparently activated. At these times, carbohydrate cravings get triggered (sometimes for days). I have learned to give in to rather than attempt to withstand them, as carbohydrate consumption is one of the few known treatments that can help porphyria symptoms (and in my experience, it does).

(16) Sun sensitivity: See Wikipedia’s entry on photosensitivity. The way I experience it is like having a mild acid burning my skin, even through clothing. I can flush for several hours afterwards, as if I had been sunburned, but the redness subsides. I sometimes experience right upper quadrant abdominal pain (often in and/or around the liver after excessive sunlight exposure).

(17) What Wikipedia has to say about porphyria. For a more medical description, see Merck’s web site.

I have two of the eight identified types of porphyria. Lab tests are not available for all eight types. The tests that are available are extremely sensitive to mishandling by laboratories that don not understand the sensitive nature of these specimens. This happened to my specimens when I initially tested for porphyria in late 1993, resulting in erroneously low levels in "abnormal but not classically representative" readings. Porphyria symptoms can continue for any length of time after an "attack" (when elevated levels are porphyrins are present) subsides, including for life. Similar to seizures, the more attacks one has, the more likely additional and more severe attacks are to occur. Lab tests may also show as normal even during an acute attack.

To my knowledge, the foremost expert in porphyria (as it is expressed in other than classic forms) is William F. Morton, M.D., DrPH. in Oregon. Dr. Morton has been in the process of writing a book on porphyria. His writing has undergone significant modifications for many years now, as the awesome amount of data coming out of the human genome project continues to shed new light on the porphyrias. I wish he would just publish already, and then write an addendum!

(18) Sensitivities to sound, light, or other sensory input: such as photophobia.

(19) SPF stands for Sun Protection Factor.

(20) SPF clothing, a "sun protective medical device." See Solumbra.

(21) neurological kindling: a situation where, like how a small amount of tinder can create a large fire, a small exposure to an excitant and lead to a significant cascade of detrimental neurological events. See Toxicant-Induced Loss of Tolerance – An Emerging Theory of Disease? by Claudia S. Miller, an article in the Townsend Letter and reprinted from Environmental Health Perspectives, Vol. 105, Supplement 2, March 1997.

(22) All the behaviors listed in the previous paragraph could be expected in anyone living with MCS. I exhibit all these behaviors.