Coping with Chronic Illness

Doctors oughta doctor.

Dr. Rob’s post A Letter to Patients With Chronic Disease made quite a stir since it was posted in mid-July. People love it, people hate it, and personally I can’t believe I’m watching classic derailing techniques like the tone argument and victim blaming play out in this space. When I read the Letter there were parts I liked and parts I disliked. (Dare I say, parts that offended me?)

[Read the rest here]

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.