The divergence of medical philosphy

What do you want from your medical treatment, May? What are your expectations? How might those expectations frustrate you?
I asked myself these questions as I hurried my way along the city sidewalk on the way to see Dr. G. The puzzle, it seemed to me, wasn’t that I'm not getting better, but that treatment for chronic illness isn't aimed at finding answers--it is goal oriented toward disease management.

Management implies that any treatment will always be only temporary. Stop treating, resume illness. This is not my goal--my goal has always been wellness, and to me, wellness means the absence of illness.

When I was first diagnosed with BP, I asked the doctor what we would have to do to make it go away. He said it was never going to go away and that, in fact, it could get worse, or better, or stay the same regardless of treatment. A multi-pronged approach was recommended to improve the chances of a better outcome. Although I have followed most of my treatment protocol to the letter, there are some things I have been unwilling to do.

If you have BP, you are encouraged to keep a sleep schedule, encouraged to get some exercise, encouraged to take medication, and encouraged to avoid caffeine and junk food. You are told that you must watch your stress. BP isn't fatal, but you sure can become annoying if you get stressed out and your mind stops playing nice with others. You need to manage stress, but you don't need to change much else in your day-to-day life unless you find that it exacerbated the illness.

I have always approached BP as a collection of challenges I need to overcome, not manage. This has always been and continues to be my goal. I swallow the pills, slap on the patch, and remain vigilant for impending mood changes. I have always done this with the intention of being the me I always was--so I could get my life back, not so I could start over with a different life.

This is the way I view illness and wellness: When you are unwell, you seek treatment that will rehabilitate you to the point where you can get back to doing what you were doing before you got sick. The goal is to get back on track--it is not to change trains altogether.

I have been down this path with BP and now I am back with the chronic pain issue. This time, I am once again being told to stop what I'm doing and do something different. It's for my own good. And this is what is at the heart of the philosophical problem.

Nervous-system-based illness is not life-threatening. It is unpredictable and it is painful, but mostly it is disruptive to a productive life. This type of illness is treated with medicine, complementary therapies, and attention to lifestyle. When I was diagnosed with BP, I was told that if I didn't change my life by ratcheting down a few notches, I would suffer dire consequences. I am being told this once again.

I'm willing to take the medication, to get stuck with needles, endure invasive physical therapy, try meditation, yoga, and so-help-me-god recite affirmations, but I am doing this so I can live life, my life. I don't want to give up my work or the other things that have meaning.

And therein lies the rub. I believe that medical treatment should be approached with the goal of restorative therapy--getting the patient back to where he or she was before illness interfered. Modern medicine assumes the patient will change and adapt to the treatment.

I want treatment to accommodate the parts of my life that are valuable to me. I do not want to stop living my life in order to accommodate the illness.

There has to be some middle ground. Otherwise, I prefer to be dead at 53 having lived my life fully rather than still be here at 65 because I obediently sat on the sidelines watching life pass me by.