Monday, October 31, 2011

The Expiratory Reserve Volume of Chronic Illness (ERV-CI)

I propose that there are a number of patients who have a spectrum of health care issues that have been Invisible until now.

It is known that access to medical care in the USA varies. Some people get nothing; some people get everything. Nonetheless, these people are in the 'spectrum' of known people who need health care.

May I propose that there is an "Expiratory Reserve Volume of Chronic Illness (ERV-CI) that has been Invisible until now. I am inspired to write of this patient population only because I have been a patient and a physician.

In the ERV-CI, patients 'float' around seeing doctors. In fact, they see doctor after doctor, year after year. They are in search of a diagnosis. They are undiagnosed and therefore not seen in any statistics of rare diseases, the chronically ill, or Invisible Illnesses. They bump up and down, searching for a diagnosis. At the worst, some of them, in frustration, succumb to suicide because no one believes them.

The Mental Health of the Chronically Ill needs to be addressed. If I know that there is something wrong with my body, yet the doctor(s) tell me that:
1. It is all in my head;
2. I should just 'get over it' and get out of bed;
3. I should be in a nursing home;
4. There is nothing wrong with me;
5. It is my 'female hormones';
6. It is my 'female depression'..... and a quagmire of similar statements. These statements are not just told to me on one occasion, nor by one health care professional, nor were they said as an unusual course of events. The attitude was pervasive. Since no one could 'diagnose' what my illness was, the theory was that I was malingering and there was 'nothing' wrong with me.

How dangerous is that to say to a child's parents, who abuse the child and mimic the doctor's words over and over again, damaging the Mental Health of children? How frustrating is it to say that to a doctor who is well-trained and knows that something is wrong? What do we call it when our bodies tell us we are sick, yet the doctor(s) tells us (s)he can not find any thing wrong? Does every illness have to rely on a chest x-ray, a chemistry panel, a complete blood count, or a myraid of other studies? Does every illness have to have a diagnostic assay in order to prove that the disease indeed exists in this patient? No.

I propose that we go back to using our stethoscopes. Using orthostatics for the diagnosis of dysautonomia, and not waiting 5 min between laying/sitting/standing, because the patient will faint. The differential diagnosis of syncope should include 'Dysautonomia', and I  believe that awareness of this diagnosis should be skyrocketing.

So the patient in the ERV-CI area of the curve. The patient goes up and down on the axis, and sometimes gets hospitalized. For hospitalization, the curve has dropped down and stopped at an impass. This is a disarticulated wavelength. It goes up and down, then it stops. Then it goes up and down again.

Years pass. People die. Divorce, depression, and a quiet (or loud) inventory of collateral damage occurs.
I say it is time for Invisible Disabilities to be counted. To be included in the statistics. And may I challenge the current statistics and say that they can not possibly be right? Invisible illnesses are invisible and without a diagnosis. That is why they are not counted in the statistics.

So what can we do? Educate, increase awareness, and discover a new paradigm wherein this ERV-CI population can be given the attention it needs. We need to look into Invisible Illnesses, and shine the light on them so that they are Invisible No More (i.e., the current mission of Invisible Disabilities Association). We need to think outside of the box. To be innovative, willing to learn, and willing to swim upstream in order to get back to our land. For this ERV-CI population exists. It skews all the data, and renders what we know about illnesses to be statistically incorrect. We need to incorporate this patient population into the existing paradigm of world health, mental health, and not just access to medical care.

Access is not enough. Diagnosis is of utmost importance. If we can get the diagnosis earlier, there will be less damage and more healing. If we can identify the current population of ERV-CI, then institute change...perhaps one day, this population will no longer exist. And that is the key note here. Just because the doctor does not find the diagnosis...does not mean that the patient does not have an Invisible Illness that has yet to be identified. These ERV-CI patient populations should be given immediate attention in an attempt to eradicate the loss of seeing a doctor only to be told it is all in your head. May I recommend Invisible Illnesses that fall into this category (not intended as an all-inclusive list):

Fibromyalgia, Chronic Fatigue Syndrome, Lyme Disease, Dysautonomia in all of its forms (e.g., neurocardiogenic syncope, postural orthostatic tachycardia syndrome), lupus, EDS, myalgic encephalomyelitis, Chiari malformation, and multiple chemical sensitivities, to name a few.

 That is all that is needed. Identify the disease. Get the diagnosis. Find the cause.
In this effort, the goal is to decrease the population of patients who are in the ERV-CI category. Simple access to health care is not what is needed. What is needed is a mindset that says, "Gee. If I don't know what a patient has, maybe that means that I don't know everything.""Maybe I should send them to a specialist."

May I predict that as more and more patients with dysautonomia develop a neurogenic bladder, it will be the Urologists, not the Cardiologists, who will 'believe' the patient. The current parameters do not fit the disease. New parameters must open up, and Urology has a pivotal role in identifying formerly Invisible Diseases by looking at residual volume, sphincter tone, patient hydration, chronic urinary tract infection, and/or urine cultures despite a clean dipstick. 

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