I’m not broken. There’s nothing wrong with me. Yes, I’ve been diagnosed with MS, depression, and bipolar disorder. Yes, it’s a struggle every day; yes it makes things tough. But it’s my struggle, my fight, my life.
I don’t need another doctor. I’ve got doctors coming out of my glove compartment. I don’t want you to be my doctor, my nurse, my chaperone, my conscience, my priest, my confessor, my mother. I already have a doctor and a mother. Sometimes I don’t even want my mother to be my mother.
Mothers aren’t sexy. Doctors aren’t fun.
What I need is a friend, a lover, a confidante, a buddy, someone to go to the movies with, or have a beer with.
You don’t go out for a beer with your doctor. You don’t cruise the lakes on your motorcycle with your mother. You don’t make out with your nurse. Well, OK, maybe one time I did.
I know you care for me and love me and don’t want me to hurt. I know you are trying to be kind and proactive. I know sometimes you can’t bear to see me hurt. And it isn’t that your care isn’t appreciated. I love you for your care. But the more you to try to find answers to questions I stopped asking years ago, the harder it is for me.
To paraphrase Joni Mitchell: you help me the most when you try the least.
I’ve come to terms with my illnesses, and I’m dealing with the tough parts day by day, in my own way. If I need help or “fixing,” or advice, you will be the first to know. Like an athlete before a big game, I psych myself up in my own style. Your trying to “fix” me throws off my own rhythm, my own timing. I end up feeling that I have to deal not only with my pain, but your misery about my condition as well. I don’t have the time to deal with that, too. I don’t have the energy.
I don’t want to always feel shame that I make your life harder. I am just as I am. I don’t want to feel guilty about being in your life. Guilt and shame and pity are dirty, but my diseases are clean. I don’t want to feel that you are my friend because you pity me. I don’t need pity. I’m not less than I use to be, I’m different. Don’t tell me that I’m so brave. What I do often isn’t by choice. I simply survive. Living with chronic illness is not this dramatic Movie of the Week experience that we see on TV. Mostly it’s a daily grind, a monotonous nag, not much different from a bodily function. I’m not a hero. I’m just me. When you make me into a brave, heroic icon or you see me as a helpless invalid, you either put me on a pedestal or see me lying broken in the road. It’s either up or down but never on an equal plane, never just you and me.
Don’t try to sell me supplements, or therapeutic machines, or crystals, or magnets, or one more damn “self-help” book. Don’t tell me about this amazing acupuncturist, or therapist, or doctor. Don’t tell me the amazing story of your uncle Jake who lost his hipbone or something and was miraculously cured by bee-sting therapy. I don’t want to do bee-sting therapy. Or fish oils or megadoses of vitamin C. I am so tired of talking about, thinking about, answering questions about my illnesses. The are a part of me, but they are not me.
You know what I want to talk about? Not the side effects of this or that med. Not how brave I am in dealing with my body and psyche. I want to talk about astronomy. The new Harley V-Rod. I want to talk about theater, and your kids, and where you went on your vacation. I want to talk about World War II aircraft and my theory that Professor Moriarty was actually Captain Nemo or else Sherlock Holmes himself leading a double life.
I want to talk about that crummy movie we just saw. I am mental health’ed out. I am MS’ed out.
I know that in many ways it’s easier for me to live with my pains that it is for you to watch me suffer. But that’s not my fault or my responsibility. Don’t put that burden on me. I’ve already got a full plate. If I ask for help, that’s different. Sometimes I need an outside point of view. But wait for me to ask for it. Mostly I need you to listen and to care, without trying to make me better.
And don’t ask me to “fix” you. Please don’t ask me for therapy. I don’t pretend to be an analyst. Go talk to your shrink, who does.
For thirty years, doctors, therapists, social workers, psychologists all tried to “fix” me, too, to make me “well,” untouched, pure, unblemished by my life. They seemed so determined to change me, to “cure” me, to turn me into someone who doesn’t have sadness or blame or pain or regret. They tried to wash me, to take away any of the gritty reality that comes from being human. Instead of trying to help me rediscover the tremendous grace that lives deep inside me, they tried to rebuild me into someone who is not tainted by suffering. This is impossible. It’s not even desirable. Because it ignores the majesty and discovery that comes from just living, just experiencing all the joys and sorrows that define life, just the way it is.
It’s my life to live, my fight to fight, my joys to celebrate, my pains to endure. So that I can say at the end that I really lived. And when my time comes, I can go down swinging.