I Just Got Diagnosed. Now What?
By Gary R. McClain
Okay, the diagnosis is in, and it’s scary. Even those of us who have never suffered anything more serious than a flu have played out the scenario in our own imaginations. Sitting across an expansive oak desk from a man or a woman in a white coat, we absorb the startling news that our lives have changed temporarily or forever. Will we be shocked? Angry? Sad? Confused? Will we fall to the ground, bang our fists against the floor, and howl in the direction of the doctor’s shoes: “Please, God, make it go away!”
I am a counselor, and in my practice I specialize in treating people who are negotiating a thicket of different medical conditions. They come to me for help uncovering their feelings, making treatment decisions, modifying their lifestyles, planning for the future.
Over the past few years I have talked with hundreds of clients who began with that daunting question: “Now what do I do?” They have either been diagnosed with catastrophic illnesses like HIV and cancer (although medical science has rendered these conditions manageable for many), or chronic illness like diabetes, arthritis, or high blood pressure, which if not treated properly can also turn catastrophic.
Regardless of the specific crisis, how you react and what decisions you make during those initial days and weeks are, I have learned, apt to impact your future in profound ways.
Decisions: Up to Me?
It’s ironic: Faced with a condition you probably know little or nothing about, you’re expected to make life-altering choices based on the characteristics and consequences of said illness in relatively short order. Why not simply take the doctor’s advice?
Because your physician may not be willing to tell you what to do.
A recent series of articles in the New York Times addressed various concerns about our current healthcare system. One of the articles, “Awash in Information, Patients Face a Lonely, Uncertain Road,” by Jan Hoffman (August 14, 2005), made the point that unprepared patients are often forced to evaluate a range of options and information sources with regard to their diagnosis and eventual treatment. The story also emphasized that physicians increasingly expect patients to take a more active role in navigating their own treatment.
Doctors want patients to be active partners, to understand their own conditions, and to essentially “buy into” the treatment path, largely because active patients make the physician’s job easier. But there is a pragmatic side as well: In today’s managed-care environment, physicians have less and less time to help their patients make decisions.
When I was growing up I often heard the saying: “When you’ve got your health, you’ve got everything.” The older I now get, the more I understand that good health is not a thing to take for granted. And as I constantly emphasize with clients who are facing chronic and catastrophic medical conditions, the healthcare system is giving us no choice but to take charge of our own care.
This all seems perfectly logical until we are sitting on the visitor’s side of that oak desk, across from the man or the woman in the white coat, having just been dubbed cancer patient, or diabetic … Now what?
The First Reaction: No Reaction
When I am being consulted by with someone who has recently been diagnosed with a serious health condition, that person almost invariably distills his or her reaction into one word: shock. Shock is often associated with disbelief. It’s only natural; human nature promotes the idea “it won’t happen to me.” Here’s how someone whom I’ll call Carole described her reaction when she was first diagnosed with cancer.
It was like the world suddenly stood still. All I could hear was my own breathing, and the thumping of my heart. At first I was completely numb, I wasn’t thinking anything. Then I started to say the word “cancer” over and over. Still no feelings. But deep inside, I realized that, no matter what, my life was never going to be the same.
The initial shock may last a few moments, hours, or days. Or it may continue on indefinitely as your emotional and rational halves struggle with the news. Even if you haven’t had the experience, you may have seen someone else go through it and felt helpless as you watched the struggle.
Most diagnoses are not death sentences, yet there is a level on which absorbing them is similar to hearing about a death. Take Carole’s awareness that nothing was ever to be quite the same. Embedded here is the realization that, yes, bad things can happen. We’re not invincible after all, and we’re getting older.
Ironically, it is the very acceptance of life changes that constitutes a significant first step toward galvanizing oneself to make difficult choices.
Experience with clients has taught me that we don’t all come to this realization at the same time or in the same way, and some people are so resistant to change that they never adapt at all. Yet while each individual copes with medical diagnosis in his or her own way, we all have roots in the earliest memories of the human species. According to anthropologists, predatory beasts were once likely to appear at any moment, so humans actually thrived if they remained a little more “on edge.” In the 1920s, psychologists started to use the term “flight or fight” to describe how people react to threat. Then, in the 1970s and 1980s, when stress emerged as a formidable concern, a third reaction — freeze — became popular. These three basic reactions — flight, fight, or freeze — are also relevant in terms of how we react to medical diagnoses.
Flight: Charging Forward — But Blindly?
I am going to describe the flight response by talking about a client I’ll call Dave — an active man without a history of health problems. Dave’s heart condition took him totally by surprise. His physician presented him with what she thought was the best recommendation — a triple bypass — and then suggested that Dave go home and think about it before making a final decision.
Dave’s sense of shock continued through the evening and for a couple of days afterward. He simply could not believe that he of all people was being told he was in anything but top condition. And his heart? Not a chance. He told his wife only that his doctor was watching his heart, but that he, Dave, was absolutely fine. His wife was skeptical. Nevertheless, she gave him space until he was ready to talk. Dave describes the next few days like this:
Once the numbness started to wear off, I kind of went into a panic. It was like I had this thing around my heart and I wanted it cut out as soon as possible. I was afraid to think because I was afraid I might talk myself into doing nothing, or I might put too much strain on my heart. I imagined my doctor as my savior. I wanted to put all of my faith and trust in her and have her direct my path. I was in such a rush, I asked her to call the cardiologist she had recommend and pressure him to schedule me for surgery as soon as possible.
While Dave was eager to place his entire trust in the first physician and treatment he encountered, I have watched other individuals in “flight mode” blindly attach themselves to unproved alternative treatments, and/or to physicians who had great bedside manners but questionable skills. Like falling head-over-heels in love, the flight response doesn’t leave room for a second opinion, investigating treatment options, or at the very least double-checking the credentials and track record of the physician on hand.
Freeze: Don’t React and Maybe the Diagnosis Will Go Away.
Not every client takes flight toward the first available treatment. Some people don’t take flight at all. Instead they sit and stare into space, literally waiting for the nightmare to pass, or for someone — usually a family member — to step in and take charge. This is understandable. Given the shock of the diagnosis and the fact that most people are unprepared to make difficult decisions spontaneously, shutting down is not an unreasonable response.
Have you ever been afraid that if you let yourself react emotionally, you might lose control? In freeze mode, the emotions appear to stop functioning. This might seem like a good alternative; the rational side of the brain has a chance to take charge without emotional interference. But logic without emotion does not always result in rational thinking — as is evidenced by a client I will call John:
I just sat there when the doctor told me, and I guess I’m still sitting. I can hardly get out of the chair, to tell you the truth. I kind of decided to be philosophical about it. I don’t know much about this, but I do know that, statistically, the numbers are against me. I mean, what can I do when fate isn’t on my side?
John has given himself up to fate, and in doing so has embraced a defense that individuals in freeze mode often adopt. Unfortunately, this also means giving up.
Fight: Striking a Balance Between Emotion and Logic
It’s been my experience that clients who deal most effectively with medical diagnoses are people whom I will call fighters. In this context, fighting doesn’t mean taking up arms; it means being empowered to understand the diagnosis, the options for treatment, and what lifestyle adjustments need to be made immediately or in the future. Being empowered is about arming yourself with rational thinking.
Fighters may also acknowledge their feelings and honor their emotions. I would even go so far as to say that exploring the emotional impact of a diagnosis opens the door to rational decision-making. Realistically, fear may never fade away, and anger and disappointment can still flare up at times. But when emotions like fear and anger are acknowledged, they may make way for hope, optimism, and a renewed passion for life.
A client I’ll call Marie put it this way:
I sat and cried and asked, “Why me?” for quite a while, maybe a few days. Then I stood up and said: “I am going to fight this beast. I’m not going to let it beat me down.” The next day I made a list of whom I needed to talk to, where I needed to go for information, and what I needed to start planning for. That doesn’t mean I don’t feel overwhelmed sometimes, because I do. But I’m also in active mode.
Marie didn’t hold back her emotions. She faced her disappointment and fear head-on, and by doing so was able to start asking questions and making decisions.
Ten Steps to Becoming a Fighter
Here’s what you can do to develop some muscle when dealing with your diagnosis:
1. Find a safe place to express your feelings.
It’s important to release your emotions, and that means all of them, even the anger and frustration you may think you shouldn’t be feeling. Find someone who can listen without making you feel judged, and who won’t get caught up in trying to “fix” you. There may be a family member or a friend who can lend a listening ear. But if not, consider talking to a professional counselor or therapist trained and experienced in working with clients facing illness.
2. Confront the fear factor.
One of the emotions you are most likely to experience is fear — of the treatments you may need to undergo, of the changes in your appearance, of the adjustments you may have to make in your daily life, and fear of death. Fear is only a feeling. Struggling against it can be emotionally exhausting, and may keep you frozen in place. Acknowledging your fear may take away much of its power, even if it comes back to haunt you once in a while.
3. Beware of adopting the victim role, even if you think you deserve it.
When something bad happens in our lives, it’s only human to ask: “Why me?” So go ahead and ask. But at some point this question will lead to a fork in the road. Choosing the path of victimhood will enable you to wallow in your feeling of unfairness, a disempowering indulgence that may undermine your treatment. Or you can look beyond “Why?” — which is unanswerable anyway — and accept the challenges ahead.
4. Designate yourself as the primary decision-maker.
My clients who are in freeze mode typically wait until a family member, or a friend, or a member of the medical establishment, steps in and takes over. These frozen ones run into the arms of a designated “savior” and don’t look back. Fighters also look to others for advice and support, but make it clear that they themselves will be responsible for their final healthcare decisions.
5. Get a second opinion, and even a third
I am always surprised when clients tell me they have committed to a treatment plan without obtaining a second opinion regarding diagnosis or treatment. I hear this from cancer patients; from people who have been diagnosed with fibromyalgia (chronic fatigue syndrome); from those with type II diabetes. Their reasons include everything from fear of delaying treatment to fear of starting treatment to concerns that the insurance company won’t pay. Mostly they are avoiding having to think about the illness any more than is absolutely necessary. But if it is at all possible — and in most cases it is possible — take the time to get a second opinion. And if the first two physicians are not on the same page, consider seeking a third opinion. Taking the wrong treatment can be as devastating as the condition itself.
6. Research your condition.
Gathering information — bibliotherapy — is another antidote to fear. Google the name of your condition, as well as the names of medications and treatments your physician recommends. Visit Websites and call organizations you trust, like the American Cancer Society or the American Heart Association. Visit your local library. Maintain a notebook and fill it with questions that arise as you go along, and also with the answers to those questions as you find them. Don’t forget to bring this notebook along on all medical appointments.
7. Think of your physician as a professional, not as your best friend.
It’s important to trust your physician. On the other hand, I often hear patients talk — no, gush — about their doctors as if the latter bear magical powers that should never be doubted. Physicians are experts, but they are also human beings. Why else would they refer to what they do as “practicing”? Moreover, physicians tell me they don’t want to be treated as omnipotent; they want their patients to do their own research and then ask them questions. Healthcare should be a shared responsibility. It is good to respect the opinions and recommendations of your doctor, but don’t hesitate to ask why.
8. Decide what you need for support, and then ask for it.
Depending on your condition, you may need a lot of support or a little. You may need ongoing emotional support, assistance with household chores like cleaning and cooking, or a buddy to help you comply with diet and exercise regimens. Only you can decide how much and what kind of help you want, and in what areas you prefer to go it alone. As hard as this might be on your ego, sit down and make a list of what you think you’ll need help with. Then make a separate list of support resources, including family, friends, and professionals. Consider joining groups that will provide emotional support and practical advice. You may also find encouragement and support through a synagogue or a church, or some other kind of spiritual community.
9. Do the numbers.
How are you going to pay for all of this? Any medical condition has financial implications. There’s no doubt that dealing with financial questions can be stressful, but the uncertainty that may result from not confronting financial issues can be downright debilitating. Treatment that may not be completely covered by your HMO or by Medicare, potential lost earnings, additional medications, support services, special diets and exercise plans, will all have to be handled at some point. Make a budget based on as many current and future expenses as you are aware of; then talk to your accountant, the billing manager at your physician’s office, and any other people in or out of your household who will be impacted by your illness.
10. Create a vision for the future.
Life is filled with uncertainties, and a medical diagnosis certainly raises new questions. For all the famous comeback kids like Lance Armstrong, Bill Clinton, and Melissa Etheridge, there are millions of courageous people who are quietly, anonymously, making major and minor adjustments to their daily lives. Your future may not be what you planned, but that doesn’t mean you don’t have a future. Revise yours based on a vision of what is realistic and possible within the context of your medical condition.
Just Diagnosed? First, Allow Yourself to Be Human
Whether a medical diagnosis propels you initially into flight, freeze, or fight mode, don’t start out by fighting with yourself. Allow yourself to react honestly and fully. Then equip yourself with knowledge, support, and professionals you trust. After all, you’re in charge.
