You Are Not Your Disease
By Sally Fisher
"We have obtained this life as a human being.
Whether we make it worthwhile or not depends on our mental attitude."
The Dalai Lama
We can choose whether to become our condition or to be a person living with a condition. We can decide whether our life becomes about our disease or whether our disease is simply a part of our entire life.
In the beginning it is appropriate and natural to be enveloped and a bit haunted by the idea that things have changed. Things have indeed changed with a diagnosis. Our fantasy of immortality is gone instantaneously. Our illusion that we are surrounded by some sort of invisible protective shield, and that these things happen only to other people, is shattered. Once we've begun to accept these changes into our consciousness, it's time to look at how we want to respond to our new reality. Most are variations on the three themes illustrated in the stories of my son Stephen, and of Amy and Al: (1) we can be felled by the news, (2) we can deny it, both of which mean that you choose to let your disease take over the featured position in your life, or (3) we can accept the news so that we can deal with it.
The choice is yours. You can either become your disease or you can have a disease. Or to state it in a different way: you can incorporate your condition into your world so that you can live as fully as possible while you ride the wave of reality. This means adopting a mental attitude that makes your life worthwhile.
The stories of Stephen, Amy and Al follow.
I remember the moment that my son Stephen, then in his early teens, was diagnosed with Hodgkin's Disease with a clarity I wish I could apply to yesterday. He had been suffering periodic swollen glands, sleepiness, and aching. Something was not quite right, but the doctors couldn't identify it. Because of his age, they dismissed his complaints as related to the onset of adolescence and my concern as symptomatic of over-protection or maternal neurosis.
I finally arranged for him to see a doctor I knew well and trusted in Chicago while he was there on a visit. When I called to set up the appointment I insisted on a relentless search for whatever it was that was wrong. This was my child. I knew in my bones that something was up. The day he went for tests Stephen was symptom free, in fact he had played baseball all morning.
I remember getting the news from the doctor over the phone and wandering around my loft, pacing in circles, tears streaming down my face, staring out the window at people going about the course of their daily routine, laughing, shopping, talking. How dare they be having a nice day? Then, realizing that something had to be done about the situation, I went into high gear arranging everything from oncologists to healers. Several days later I went to the airport to pick up Stephen.
I stood at the gate waiting for my boy and almost missed him. I saw someone who resembled the son I'd put on the plane a week earlier but stooped like an old man walking slowly and carefully towards me. He was colorless, sallow, and gallows sad. We hugged tightly and cried together. As we headed towards baggage claim he could barely walk. I became very alarmed, then suddenly pictures of my parents treating him like a "cancer victim," furtive glances, periodic sighs, cheek and head strokings, and admonitions to save his strength flashed before my mind's eyes. Of course! In their concern they had sapped him of his very life force. He had become his disease. He had changed in a heartbeat from a kid playing center field to a dying child.
As we walked I asked him if he felt sick. He described his symptoms. I told him they were easily diagnosable as panic and depression, which seemed about right given the situation. I suggested that we go somewhere so we could talk about how he felt. He brightened a little. I asked him if he was in pain. He answered that he might die. I said that I knew that but where did he hurt. He answered that he had cancer. I stuck to my guns, though it was hard, but in reality nothing had changed. Everything he was going through was the result of a piece of information not his cancer. I kept asking him where it hurt until he realized that the hurt was not physical, that his heart was broken, he didn't know what was going to happen to him and he was scared. He could deal with that. He straightened to his full height and his normal coloring began to reappear. Arm in arm we collected his luggage and went to his favorite place for the best burger in town.
Our story has a happy healthy ending. Stephen went through surgery, radiation and doses of unpleasant medication but through it all he talked about his feeling, his fears and basically lived his life as normally as possible. He was a kid who had a disease, it didn't have him. He held his illness and pain in the container of his whole life rather than allow the illness to become the container for everything he thought, felt and did.
Sadly this isn't the case for everyone. Amy, a nurse who attended several workshops that I created for Caregivers, was diagnosed with lupus. She was constantly exhausted, she ran high fevers, she had severe joint pain, she had rashes and a raft of other related ills, but worst of all, she lost herself in the process of dealing with the situation. She was unable to work and take care of others, which was how she identified her value. She no longer knew who she was. She began to identify herself as her condition, her disease.
She was unaccustomed to letting people help out and unwilling to accept support. After all, giving support and taking care was her job! She put up a front while beneath her veneer she was suffering, not just from her symptoms, but from depression. She pushed everyone away but her closest family, and then felt isolated, helpless and alone. She immersed herself in researching lupus, which was a great idea, but she became so obsessed with the research and with her fight that she lost all perspective and lost sight of the idea that her life had room for anything more. Even her family began to lose patience because all she ever spoke or thought about was her plight and the results of her tireless search for answers. She lived every day of her illness in its context and so lost touch with everything that made her laugh, brought her pleasure or had always had meaning to her.
Al was an entirely different story. After Al was given a Hepatitis C diagnosis he joined a healing group at his new age church. He was determined not to let his diagnosis get him down for even a moment. Al had been following a practitioner who championed positive thinking and warned against the perils of anger, negativity or buying into an illness.
Al skipped over the shocked, outraged, frightened, upset that usually follows hot on the heels of finding out that your liver is in jeopardy. He skipped right over the doubt, the concern, the sense that his body had betrayed him and went right to saying that all was right in his world, everything was perfect, and that he was fine, just fine. Al spent every waking hour affirming that his disease was going away and eliminated anyone from his life who dared suggest that everything wasn't the way he had constructed it.
Though Al wouldn't deal with, acknowledge, treat or confront his Hepatitis, it was there none the less. Wishful thinking, magical thinking, and denial can't make something go away but it can consume your life. What happened to Al, of course, was that he became his disease as surely as if he'd drowned in it. It's just the flip side of Amy. He gave his power over to his disease by being unwilling to embrace the truth. He let himself become really sick before he finally faced the truth. He put his name on a transplant list and became one of the lucky ones.
It doesn't matter what you have been diagnosed with. The choice is yours.
Sally Fisher is Founder of Intersect Worldwide. Intersect Worldwide which works at the intersection of HIV and violence against women and girls, www.intersectworldwide.org.
Sally is author of Life Mastery (Crown Publishing) and is currently working on a new book: Don't Just Stand There, Do Something