I Just Got Diagnosed: Now What Do I Do? 

 “I just got diagnosed.  Now what do I do? 

 You may have asked this question, to yourself, a friend, or to a healthcare professional.  Or someone may have asked you. 

 I am a counselor and in my practice I specialize in working with people who are coping with medical conditions.  They come to me to get help in uncovering their feelings, making treatment decisions, modifying their lifestyles, and planning for the future.  Over the past few years, I have talked with literally hundreds of clients who began our conversation with that question.  They had been diagnosed with illnesses that fall into the category of catastrophic, like HIV and cancer, although medical science has rendered these conditions chronic for many.  And I have talked with those who have been diagnosed with conditions considered chronic, like diabetes, arthritis, and high blood pressure, although those these conditions can also become catastrophic. 

 Regardless of the specific diagnosis, what I have learned is that how you cope during those first few days and weeks after your diagnosis, and what decisions you make – even though you may feel totally unprepared to think or do anything – will have a profound impact on your future. 

Decisions: Up to Me? 

 Let’s focus for one more moment on the irony of being faced with the news of a condition that you don’t know anything about, yet are being expected to make decisions about.  You might be wondering: Why not simply take my doctor’s advice? 
The first answer to that question is:  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) discussed the decision-making process that patients go through when faced with a diagnosis.  The author made the point that patients, while unprepared, are forced to evaluate a range of options, and information sources, with regard to their diagnosis and its treatment.  The author also emphasized that physicians are increasingly expecting patients to take an active role in making treatment decisions. 

Physicians want patients to be active partners, to understand their own condition and to essentially “buy into” the treatment path.  Active patients are easier for physicians to work with.  And there is a practical side: In today’s managed care environment, physicians have less and less time to help patients to make these decisions. 

 When I was growing up, I often heard an old saying that went something like, “when you’ve got your health, you’ve got everything.”  As I get older, I understand more and more that good health is not something we can take for granted.  And as I constantly emphasize with clients, many of whom are facing catastrophic and chronic medical conditions, the system is giving us no choice but to take charge of our own healthcare, especially in times when our health is at risk. 

 This all seems perfectly logical until one of us is sitting in the office of our physician, or a specialist we have been referred to, and we are given an unexpected, or a dreaded, diagnosis. 
 Now what? 

Ten Steps to Becoming a Fighter 

 Here’s what you can do to develop some “muscle” in dealing with your diagnosis.

 1.  Find a safe place to express your feelings

 It’s really important to express your emotions, and that means all of them, even the thoughts and feelings that you may think you shouldn’t be having – all the anger and frustration that may be bubbling up inside.  Find someone who can listen without making you feel judged, and who won’t get caught up in trying to “fix” you because of their own feelings of helplessness.  You may have a family member of or a friend who can be a listening ear, but if you don’t, consider talking to a professional counselor or a therapist who is trained and experienced in working with clients who are facing illness. 

2.  Confront the fear factor

 One of the emotions you are most likely to experience is fear; specifically, fear of the medical treatments you may need to undergo, fear of the changes in your appearance, fear 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 keep you frozen in place.  Acknowledge your fear, and you take a lot of its power away, even if it comes back to visit once in awhile.  

3.  Beware of adopting the victim role, even if you think you deserve to 

 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 leads to a fork in the road.  You can choose the path of victimhood, and allow yourself to be engulfed by the sense of unfairness, which is disempowering and may possibly have a negative effect on your treatment.  Or you can choose to look beyond the “why” question – which is unanswerable anyway – and accept the challenges ahead. 

4.  Designate yourself as the primary decision-maker  

Some of my clients have essentially wited until a family member or a friend, or the medical establishment, stepped in and began to make decisions for them.  Otehr clients ran into the arms of their designated “savior” and didn't look back.  Fighters also look to others for advice and support, but they have also made it clear that they have placed themselves in charge of their healthcare decisions. 

5.  Get a second opinion, and even a third 

 I am constantly surprised by clients who tell me that they have committed to a treatment plan without obtaining a second opinion regarding either the diagnosis or the treatment.  I hear this from clients with conditions ranging from cancer to fibromyalgia to type II diabetes.  They give me all kinds of reasons for avoiding a second opinion, including fear of delaying treatment any further, a desire to avoid treatment as long as possible, and concerns that the insurance company won’t pay for it.  Mostly, they are avoiding having to think about illness any more than they have to.  But if at all possible – and in most cases it is possible – take the time to get a second opinion of your diagnosis and recommended treatment.  And if the first two physicians don’t agree, consider getting a third opinion.  The wrong treatment can be as devastating as the condition.      

6.  Research your condition 

Information-gathering – bibliotherapy – is an antidote to fear.  Google the name of your condition and the names of the medications and other treatments your physician recommends.  Check out the Websites of organizations you trust.  Call organizations like the American Cancer Society or the American Heart Association.  Visit your local library.  It can be helpful to maintain a notebook with what you learn, and any questions that arise, and bring along to your next appointment with your physician.  

7.  Think of your physician as a professional and not as your best friend 

 It’s important to trust your physician and to feel like she or he knows what they are doing.  Yet, I often hear patients talk – or gush – about their physicians as if they not only hold the key to the health but hold some kind of magical power such that they should not be questioned or otherwise doubted.  Physicians are experts in their own right but they are also human beings.  They aren’t infallible, after all, why do they refer to themselves as “practicing?”  And keep this in mind: Physicians tell me that they don’t want to be treated as all-knowing, but want their patients to do their own research and to ask them questions.  Healthcare is a shared responsibility, a partnership.  Respect your physician’s opinions and recommendations, but always ask why. 

8.  Decide where you need support and then ask for it 

 Depending on your condition, you may minimal support or you may need a lot of it.  Examples of support that you may need to consider include ongoing emotional support, assistance with household tasks like cleaning and cooking, a buddy to help you stay compliant with diet and exercise regimens… only you can decide where you want help and where you want to go it alone.  As painful as it may be to you ego, sit down and make a list of what you have to accomplish and where you may need help.  Make another list with your support resources, including family, friends, and professional.  Consider support groups that you can join as a source of both emotional support as well as practical advice.  You may also find encouragement and support at a synagogue or church, or other spiritual community. 

9.  Do the numbers       

How are you going to pay for all of this?  Any medical condition has financial implications.  While dealing with financial questions can be stressful, so can the uncertainty that comes from not dealing with them.  Factors such as treatment that may not be completely covered by your HMO or 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 any current and future expenses that you are aware of.  See where you are at risk and talk to your accountant, the billing manager at your physician’s office, and any other people in your household who will be impacted by your illness. 

10.  Create a vision for the future

Life is filled with uncertainties and, admittedly, a medical diagnosis introduces new questions.  For all the comeback kids like Lance Armstrong, Bill Clinton, and Melissa Etheridge, there are millions of people living courageously by making major and minor adjustments in their daily lives.  You future may not be what you had planned, but that doesn’t mean you don’t have a future, but you may need to make some revisions.  Revise yours based on a vision that includes not only what is realistic but also what may not be so realistic but still may be possible. 

Just Diagnosed?  First, Allow Yourself to be Human

 Whether a medical diagnosis initially propels you into flight, freeze, or flight, don’t start out by fighting with yourself.  Let yourself react honestly and fully.  And then equip yourself with knowledge, support, and professionals whom you trust.  After all, you’re in charge. 

Gary R. McClain, PhD is a counselor and researcher in New York City.  He is creating a Website, www.IJustGotDiagnosed.com.