Coping with Chronic Illness

How do you know when to call your doctor?

I didn't write this Chronic Illness Cat submission, but I could have. Every three months a nurse from my specialty pharmaceutical provider calls to ask about my chronic illness. She has a list of questions about symptoms I may have and I generally answer them by saying "yes, but it's nothing new." If someone isn't asking me about them I'm generally not paying attention to them, because these symptoms are my new normal.

So how do I know when something warrants medical treatment? How much pain is too much? How many extra muscle spasms? How much fatigue?

The answer for me is I don't know, and I probably won't know, so I have to place my trust in someone else. That someone for me is my MS Nurse. She's such a valuable part of my team, maybe one of the most valuable parts. She listens to my concerns, gives me information, and, most importantly, tells me when something requires an appointment with my neurologist. I couldn't do it without her.

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.]