Prepared for the Road Ahead

What Happened to ME?

“Hi. I’ve got diabetes, cancer, HIV.” (Fill in the blank with the name of your medical diagnosis.)

A new client often introduces him- or herself that way, with the name of their diagnosis, and I am tempted to answer: “Hello, (diagnosis). I’m Gary.”

I am a counselor who specializes in working with people facing a medical diagnosis; some are life-threatening and some are chronic conditions. Now I am going to talk to you the way I talk to them about the emotional reactions to a diagnosis, the new feelings you, like they, have that are uncomfortable and strange, and the feelings we all know must be hiding somewhere below the surface but that haven’t surfaced, at least not yet.

Any new client coming into my office is struggling with their diagnosis and what it will mean, whether they are newly diagnosed or have been living with the diagnosis for some time but are now facing new challenges. I listen to how they describe their feelings — they talk about their diagnosis as if it were a dark fog that has settled all around them, sucking out their strength as it wears them down, and threatening to burrow down into the core of their being. And it is this image of themselves — along with their emotions, their coping skills, and their connection with the world around them — that concerns me most.

Ultimately, among the many issues all newly diagnosed clients deal with, the question of self-image — what a diagnosis means in terms of how they view themselves — is fundamental. Who am I now? Even those who have a longer experience with the condition, having been diagnosed one or more years previously, are asking the same question. The self-image question seems to return, and feel even more difficult, when a change in condition necessitates a change in treatment.

Invasion of the Identity Snatchers.

I often hear my clients discuss their diagnosis as if it were something out of a science fiction movie like “Invasion of the Body Snatchers,” an invader that has taken over their whole identity. Rooted in their fear due to a serious lack of information, which in turn leads to more fear, they are trapped in a closed loop that feels like a foreign invasion.

When my clients describe the shock, fear, anger, and confusion they experience when faced with the bad news about their health, especially when they have not been experiencing any symptoms, one of the first questions they ask is, “Why me?” And this question leads to other questions: “What will happen to me?” “What will my life be like?” “Will I be normal?”

If you’ve ever asked yourself these questions, you probably found yourself in the struggle between helplessness and hopelessness, and felt that dark fog — fear — closing in around you.

Healthcare professionals can help answer some of your questions by providing sound medical information and explaining how this has helped other patients of theirs. However, their main job is to encourage patients to remain compliant with medication regimens and lifestyle changes, and the one tool that they have learned is most effective is to instill fear. Doctors may warn of the consequences of using alcohol, for example. But when a condition may be largely silent, the use of such one-two punches to drive the point home makes for some very recalcitrant patients. Who wants to be threatened with further deterioration? We all understand that this is the reality of the diagnosis. However, what we also need to understand is that a by-product of compliance can also be further reinforcement of the fear factor.

Furthermore, friends, family, and support groups — out of their own sense of concern and helplessness — may also constantly reinforce your identity as a diagnosis with the best of intentions — to encourage you to stay compliant.

While I am not minimizing the importance of being vigilant in facing your diagnosis and doing everything possible to live a healthy life, I am concerned when clients become stuck with a label and are unsure how to move beyond it, not even recognizing that they should.

Clients describe living with the fear that the “other shoe will drop” at some point. From there the fear can be further compounded to not only fear of what might happen, but also fear of becoming too optimistic, and therefore being unprepared for any further disappointments. Do you see the pattern? Psychologists call this superstitious thinking. I encourage you to consider this: Are you living with (whatever your diagnosis is) or is it your reason to live?

Before you answer that question, I would encourage — even challenge — you to consider the basic core of your identity as a human: Who are you to yourself? Who are you to others? Who are you in the world? Where do you want to go in the future?

And here are some guidelines to help you answer these questions: