One woman's journey and dawning realization of the slow destruction of her spirit while trapped in the jaws of disability.

Disability is at first an affliction of the body, then a state of mind and finally a shackle upon the spirit.

Lydia M N Crabtree, 2012

Tuesday, February 7, 2012

Chronic Illness Frustration

picture by © brucecombs
                The medical community likes boxes. It’s why you check out with a huge piece of paper filled with little boxes the doctor completes. They like codes, medical codes that clearly define exactly what is wrong. Doctors also like being right.

                Since the beginning decline of my health nearly three and a half years ago, I have defied boxes and codes. My illness has progressed and Tony and I have searched for answers from nearly every specialist around. We have joked about how I need to be a guest on “House,” then maybe we might come up with some answers.
                As silly as that may sound, I do believe that is part of the issue. David Agus in The End of Illness, discusses how doctors have been driven into a treatment of disease as these little boxes. Instead of treating the body as a whole, we are treating the body as a make-up of separate systems that do not interrelate and do not impact one another. The body is a WHOLE system and by breaking it up and trying to force the body into these little boxes, we are just avoid opportunities to cure illness.

                He also talks about a change in attitude toward illness. Instead of saying, “I have cancer,” which implies the person has ownership of the disorder. We should be saying, “I am cancerous,” rather the body I live in is being attacked by an invader. Illness is not a noun. It is a verb.
                So as I have bounced around to all these different doctors and specialists I have learned a few things.

1.       Doctors are for the life threateningly ill or the easily cured or diagnosed. If you fall outside of one of these three categories you threaten their ego and bring them doubt and are likely to be treated very poorly.

2.       Blood results only meaning something if you fit into one of the above categories. I haven’t had a normal blood result in three years. When we point this out to doctors, my results are dismissed as an anomaly. Leaving me feeling that I have to wait until I fall in to the Life Threateningly Ill category before these anomalies will be investigated. This has lead me to say, “If these test mean nothing, then stop poking me!”

3.       The medical community overwhelmingly treats the symptoms not the disease. If you have cancer – that is something they can fight. Even AIDS can be fought now. If you fall into a chronic illness, it seems the medical community isn’t really concerned with figuring out how to fight that. They would rather treat your symptoms and have you not complain.

4.       If you voice a concern that has come from your own research, you are rocking the doctor patient boat. If you object, then you are just being irrational. Or you are depressed and that is clouding your judgment. NEVER have a found a doctor who has taken my question or challenge seriously, seeing it only as a challenge to their doctor authority. (Well that is not entirely true I can name quite readily the two doctors who actually talked to me about my own research and then did respond to my requests.)

5.       You must see a doctor and HAVE THE SYMPTOM at the time you are seen in order to be believed. Last week a spent the majority of the week with swollen hands and feet. When I finally got to the doctor yesterday, this bout (this was the second bout of this symptom) had significantly gone down. He diagnosed me based on my presentation at that moment. When I mentioned the previous two times I had significant swelling. He dismissed it. I feel largely because he just didn’t believe me.

6.       Specialists could care LESS if you believe symptoms related to other specialties actually add up to a diagnosis. So they treat your body as these independent systems that do not work together. They are unwilling to go beyond the box and think about the possibility that an interaction from other specialties might be significant.

7.       If you are emotional, that suddenly becomes a symptom and gives the doctor more leverage to dismiss any other symptoms you may point out. Your emotion is a weakness of your will and never springs from the psychological beat down you have taken by being chronically ill for years. Emotions are another symptom.

8.       Humans don’t get sick, the body does. Therefore, doctors will treat patients as a body not a human.

I am sure this sounds harsh. It is probably born out of yet another unsatisfactory doctor’s appointment. I have some suggestions to some doctors who come across the chronically ill.

1.       A little empathy might actually lead you to get the respect and cooperation of the patient.  If I thought a doctor I met actually gave a shit, I might be willing to accept the advise or information they have to share.

2.       If something is deemed “insignificant,” you need to explain WHY. Patients are able to access lots of information about testing and their meanings on line. They are educated in a way patients of the past are not. Telling them WHY blood results are insignificant and what levels or situations would make them significant might gain your patients trust instead of their distrust.

3.       When a chronically ill patient shows emotion it is not because they are irrational or depressed and it is not necessarily another symptom to be analyzed. It is because they are frustrated, tired, in pain and confused and have probably been that way for YEARS. Treating these emotional outbursts by ignoring those leaves the patient believing you sincerely do not care and there is no basis for trust between the patient and doctor.

4.       Chronically Ill Patients are sick. I know there are hypochondriacs out there; however, most patients who present as chronically ill are really sick. When I was eighteen I saw a doctor several times complaining of flu like symptoms and extreme fatigue. After lots of tests and visits, the doctor finally told me to seek psychological help. My problem wasn’t physical it was mental. A week later I became herniated in the lower left abdomen. I sought a surgeon, who quickly scheduled surgery. This simple surgery turned into major surgery when the surgeon had to call in assistance and they had to remove the lymph gland that fell out onto the operating table when they cut me open. After biopsying the gland, it was determined I had Katscratch Fever. A very rare disease that presents typically with a large rash over a lymph gland. A rash I never presented with. However, I had all the other problems, swollen glands, flu like symptoms and extreme fatigue. The minute a doctor dismisses a patient when you could have said, “I think you need to see a psychiatrist OR you have something going on that I am unable to figure out.” Might have gone over better with the patient. You might not even look like an ass when some other doctor discovers the actual illness.

5.       When medical experts in disorders say that there are a small percentage of people who do not present as “A typical,” it is possible your patient is part of that small percentage. What does it hurt you to be sure they are not, even if you seem sure that this small percentage is not likely? Again wouldn’t that foster doctor patient trust? The patient has to pay for the blood test anyway. It is no skin off your nose and you may learn something or get to treat someone who is not “A typical.” Something you may only come across once in the entire lifetime of your practice.

6.       Refrain from parting shots as you walk out the door. Saying things like, “When your attitude improves, you’ll feel better.”  Or “Good luck.” Or “I’m sure your feel better soon,” does not help the attitude or mental and emotional condition of the patient. And they are often forced to refrain from the desire to get up and punch you out.

7.       Patients with a history of addiction, suicidal attempt or any other mental illness or condition are not automatically lying about their pain or symptoms. If you don’t ask about how these conditions came about, whether or not the patient is in counseling, then how can you be so assured that it is some symptom of the disorder you are diagnosing? These conditions are often affected by EXTERNAL factors like an abusive past or a bad combination of medications. Not understanding these things or even asking about them makes you seem like a doctor who cares only about your point of view and even a little incompetent. How can you diagnosis a patient you haven’t really asked questions of? By assuming you know something you become an opinion to distrust.

8.       Chronically ill patients come to you suffering from one emotional condition: Chronic Illness Frustration.  In order for you to be believed, you must be willing to sympathize with this condition in order to gain their trust. By dismissing the idea that these patients have suffered significantly and constantly, gives the patient an unfavorable view of you. Most will leave believe you were acting like a prick. There just isn’t any other term for it. Last time I checked most patients aren’t going to listen to the opinions of pricks.

Chronically Ill patients need to be treated differently. When you, as either a doctor or human, come upon them, I urge you to fight against a society that says that these outside the box patients are just mental.  Fight against your own discomfort at being confronted by someone who physically suffers without easy explanation.

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