Coping with Chronic Illness

Good Patients, Bad Patients, and the Stigma of Chronic Pain

Here are 10 culprits of the Good Patient Syndrome, where otherwise assertive individuals find themselves strangely mute as patients.

1. Pain is often invisible.
2. Pain patients are often stigmatized.
3. The response to pain medication is often misunderstood.
4. Pain patients may have trouble functioning properly.
5. Managed care does not allow adequate time for complex cases.
6. Difficult pain cases are confused with difficult patients.
7. Cultural symbols enforce deference to doctors.
8. Chronically ill patients have disease fatigue.
9. Doctors follow in each other’s footsteps.
10. The devil we know seems better than the devil we don’t.

[10 Culprits of the Good Patient Syndrome]

I think about this often. So far nothing has worked for my pain, at least not enough for me to be willing to endure the side-effects of extreme exhaustion and mental fog (sleep 20+ hours/day, be groggy and unable to think during my waking hours). My neurologist is wonderful and encourages me to take a big role in managing my own pain, but I worry about things beyond her, like insurance companies and the Social Security Administration. To them it might appear I am doing nothing for my pain because I'm not willing to take those medications. To them it might appear I'm a difficult patient, someone who doesn't want to heal. Or maybe I just seem like someone who is making it all up.

Sometimes I do hit that point where I'm "sick and tired of being sick and tired." I don't have the energy, the resources, the spoons to try one more medication and one more treatment. Now, when I get to that point, I take a break. I try things when I'm ready. I'm far more interested in achieving whole body-mind-emotional wellbeing than I am in a quick fix. But, again, does this make me look like a difficult patient to someone who doesn't know me or my history? Is this somehow wrong in the eyes of the mainstream medical profession?

In some ways I've become dependent upon the medical profession and it scares me to think that one bad doctor could make me look like a difficult patient who doesn't deserve care. Thank gods for my wonderful doctors.

[Note: Privilege Check for Dr. Dillard who is quoted in number 10 in the original posting and compares staying with a doctor to women who stay in abusive relationships. Nothing is like an abusive relationship other than an abusive relationship. Also, you're not completely right about why women stay. Yes, my domestic violence advocate slip is showing.]

Bad Patients Need Good Doctors.

It seems, in fact, more common than not for patients to defer to doctors and bodyworkers, even when the patients know that doing so is not in their interest. It’s a phenomenon I have come to call the “good patient syndrome,” caused by the following factors:

1. There is a power discrepancy in the health care hierarchy.
2. There is a stark reality that the life of the patient is literally in the hands of the health care practitioner.
3. There is a sense of trust that “doctor knows best.”
4. Those with chronic conditions are usually overwhelmed.
5. Those with chronic conditions are often desperate.

[Good Patient Syndrome]

When I first met my Neurologist I said to her, "I am not a good patient." She asked me what I meant by that and I told her that I was a student and a writer and that I would not trade off my ability to function in those ways for something that eased my pain. She told me that meant I was a very good patient. I think that means she is a very good doctor.

I'm still having very little luck in finding anything that helps with my post-herpetic neuralgia pain. I have something that helps a little with the allodynia and nothing at all to help with the underlying nerve pain. I keep trying, but I'm picky about what meds I'll take. I'd rather endure the chronic pain than have some of the side effects, especially the mind-dulling, body-exhausting ones the anti-convulsants cause.

I can easily imagine how I could have been a Good Patient. Ten, twenty years ago I might very well have been. With the PHN, sometimes I am desperate and I'm certainly overwhelmed. It's tempting to blindly trust a doctor because they are supposed to know more about my medical condition than I am. And it's frightening to think I might be denied care or support because I've been labeled as a bad patient (hysterical, lying, hypochondriac, you get the picture) by a doctor whose instructions I refused to follow.

I'm fortunate in my doctors and unbelievably grateful for them. They tell me what they know and what they don't know, they tell me about the research they have to do before giving me any treatment suggestions, and they encourage me to take an active role in my pain management. Because I'm a Bad Patient and they're Good Doctors.

My benchmark of pain.

The point of this entry is that pain is not a “thing” you can treat in a definitive fashion. It’s your brain’s response to something that’s happening to you. There are three main parts to it – the stimulus, how your brain reacts to the stimulus, and how you (meaning you the individual, the personality, the consciousness) react to how your brain reacts to the stimulus. [What is Pain?]

With me, the stimulus happens when my nerves misfire, which is what PHN makes them do. How my brain and I react to it is different now than it was when I first came down with this. PHN pain, at least certain kinds of it, are my new benchmark for measuring other types of pain.

I was recently asked to measure a particular pain I had and before I answered with a number between one and ten on the pain scale I stopped and thought to myself "how does this pain measure against PHN?" It hurt less, so instead of answering "six," I said "four." I wondered after if I gave the right answer. Did my answer lead the doctors to believe the condition wasn't serious? Because it was a great deal of pain, but compared to what I live with every single day it was bearable.

I'm careful when I talk about pain levels when at the doctor's. Routinely, at the beginning of every appointment with every doctor I am asked "are you in any pain today?" I answer yes, because I am, and I tell them my pain level. Then I clarify by saying "I have a chronic pain condition, I'm in pain every day." It's in my records, they should know, but I'm afraid if I don't say that they'll think there's something seriously wrong to be dealt with right at that very minute. (Since my gynecologist, for example, can't help with my PHN, I really don't want to waste that kind of time.) But I also worry that by not wanting to discuss it or by saying it with a smile that my pain will be dismissed as being less than it is.

I don't talk about my pain often, outside of the doctor's. I try to not weep over it, or rage, or do anything that will upset myself. That isn't because I'm so stoic and so able to handle the pain. It's because I don't see the sense in getting myself upset because there is nothing I can do about this that I'm not already doing. All getting upset will do is cause my nerves to fire more and put me in more pain and, frankly, I'll pass on that. Sometimes, mind, I weep and rage despite my best intentions.

Yeah, it hurts.

Learning to be disabled in my own way.

It was only recently I was told in a very gentle voice, “You’ve gone past the time when this would have healed itself.”

Well.

I’ve had post-herpetic neuralgia (PHN) since having shingles in 2008, and it was just the end of 2009 when I started to adjust to the fact that it wasn’t an illness, something that was temporary, but was a long-term disability. That was a difficult adjustment, learning to use that word, to apply the “disabled” label to myself.

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Shingles, Post-Herpetic Neuralgia, and Me!

I came down with shingles in March 2008. Shingles “is a viral disease characterized by a painful skin rash with blisters in a limited area on one side of the body, often in a stripe. The initial infection with varicella zoster virus (VZV) causes the acute (short-lived) illness chickenpox, and generally occurs in children and young people. Once an episode of chickenpox has resolved, the virus is not eliminated from the body but can go on to cause shingles—an illness with very different symptoms—often many years after the initial infection.”

Lucky me, I got Post-Herpetic Neuralgia afterward. As my doctor put it my nerves are “freaking out.” “Postherpetic neuralgia is thought to be nerve damage caused by herpes zoster. The damage causes nerves in the affected dermatomic area of the skin to send abnormal electrical signals to the brain. These signals may convey excruciating pain, and may persist or recur for months or even years.”

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