As you can probably tell after that last blog entry, I’ve been thinking a lot lately about the situation I now find myself in. Being sick, seeing years slip by without seeing any improvement. There comes a point where you feel as if you need to do something drastic, or you’ll end up stuck in this cycle of pain and decay forever.

    Part of this has been brought on due to a rather jarring frustration with my primary care physician. He’s been playing things so safe that his inaction is causing serious complications. But he still doesn’t seem willing to admit that perhaps this isn’t the time to take the conservative past. He’s been sitting by for months as I continued to grow, continued to swell, until now I’m in so much pain that I can barely move, and I don’t even look like myself anymore. It’s depressing. What little life that I had left has finally been scratched out. All that’s left is an empty existence that consists of sleeping, swallowing pills, sitting, and going to sleep again. It’s awful. And I’m frustrated because I keep trying to explain the day to day consequences that I have to deal with due to his inaction.

    I’ve been wanting to find a new primary care doctor, but I’ve already been to see so many. And after a doctor actually threw up his hands and told me he didn’t want to deal with me anymore, you kind of lose hope that you’re ever going to find one who understands you, is willing to accept unusual cases, and isn’t put off by not feeling like an all-knowing God.

    All of this frustration had proven to be rather all-consuming. All I could think about were the negatives, the things I didn’t want. Then last week I went to see my pain management doctor. I’ve grown really close to that doctor; I feel like he really understands me and truly respects me as a person. Right away he saw how drastic my situation had become; so much so that as I was struggling to get up onto the examining table, he looked as if he were about to cry. We started talking about this problem with primary care doctors, and he asked me what it was I was looking for. That started the wheels turning, and finally tonight, unable to sleep yet again due to the pain, this simple phrase popped into my head:

“I am not my disease. My diagnosis is not my name.”

    These two simple sentences started a cavalcade in my mind, thoughts tripping over each other as they spilled forth into my conscious mind. What came from that avalanche was a list that I’ve decided to call “The Patient’s Contract”. It’s basically a conversation with a doctor in list format, with the basic expectations and rights that a good doctor should guarantee a patient. I’d love to get your feedback on it, and if any of you have any suggestions for further additions to the list, please let me know. Once I’ve settled on the finished list, I’m going to design a t-shirt to wear to doctors offices. I’m also thinking of selling it from the Dercum Society website. So here’s the list; please take a look and post a comment telling me what you think of it. It’d mean a lot to me.

The Patient’s Contract

I am not my disease. My diagnosis is not my name.

I am a human being; a person with feelings, with fears, with hopes. Do not treat me as anything less.

I have a body and a soul. They are one; do not expect to treat one without considering the other.

I have dignity. With all of the sacrifices that this life requires, do not ask me to forsake my humanity.

I am not a science project. I am not a guinea pig. Please do not ask me to submit to tests unless they will directly benefit my care.

I have the right to say no.

I have the absolute right to privacy and discretion.

I will not think any less of you if you admit when you don’t know the answer. But I will expect you to exercise all that is in your power to find that answer.

I recognize the rules, guidelines, and ethics that govern your profession, and I will never ask you to break them.

I have a life. Please remember there are a million things I would rather dedicate my time to than spending my days in a hospital.

I have the right to seek out a second opinion. And a third. And a fourth. And a fifth. As many as I deem necessary.

I know my own body. Trust my years of experience in living in my own skin.

I am unique. I may not speak, react, or behave like your other patients. Do not judge me on a curve.

I will not question your pain if you do not doubt mine.

I am in the midst of a major battle. Forgive me if sometimes those war wounds show.

I will be honest with you and I expect complete honesty in return. Never keep me in the dark.

I fight for one reason: to live a better life.