Introduction
“I just got diagnosed. Now what do I do?”
The focus of my professional work is on helping patients to cope with medical diagnosis. So I hear this question a lot. But my colleagues often tell me that their clients also talk to them about their health issues, including recent diagnoses.
As mental health professionals, we may provide the only opportunity that newly-diagnosed patients have to talk to someone in this situation. The traditional medical establishment is equipped to help patients from a medical, but not an emotional, perspective. Family members and friends are dealing (often unsuccessfully) with their own emotions and helplessness.
Our clients facing a medical diagnosis look to us for help in sorting out complicated and scary feelings during a highly stressful time, so that that they can move forward in their lives. In this regard, our job is helping clients to define and embrace a ‘new normal’ – with a positive self-image; retention of as many cherished routines and rituals as possible; supportive relationships – but also help them to integrate the effects of treatment and make ongoing lifestyle adjustments. Clients facing a diagnosis want nothing more than to be as normal as possible.
If newly-diagnosed patients are able to get needed emotional support early on in their diagnosis, they will be that much better prepared to cope as they move forward with their treatment. As counselors we help them to prepare for the road ahead.
The Unanswerable Question That Must Be Asked: Why Me?
Newly-diagnosed clients inevitably ask one question, namely, ‘Why me?’ This may be a medical question, as he/she tries to understand the medical reasons behind the diagnosis. They may feel a sense of self-punishment as they ask it, wanting, and not wanting, to know if they had done, or not done, something that might have led to the diagnosis. Patients may have a sense of guilt around this question, and wonder if they have the right to even question why they received this news versus the diagnosis being given to someone else. Clients may express acceptance, but nevertheless ponder the randomness of life.
The point is not to answer this question. For many clients, the ‘Why me?’ question opens the floodgate to releasing their own emotions, because it is a way of articulating that basic question of fairness and the role of fate, core issues that patients grapple with as they begin to process their diagnosis, and move toward acceptance and empowerment. Ultimately, ‘Why me?’ is an existential question – a question of greater meaning from a spiritual perspective. As a counselor, I may also discuss with my client how they might experience their own spirituality more fully.
Facing Difficult Emotions
Hearing news of a medical diagnosis can bring up a lot of feelings in someone newly-diagnosed, and many of these feelings are uncomfortable. It is common, for example, to feel sad, scared or angry. After all, a medical diagnosis has a physical impact, including adjustment to medication schedules and related side effects, recovery from surgery and other treatments, loss of mobility, changes in diet, etc. And this means the probability of change. Human beings are creatures of habit – we are not ‘wired’ to embrace change. For a newly-diagnosed anticipation of change is even more profound, because uncertainty about the future is accompanied by fears about loss, including financial stability, relationships, favorite activities… and questions around whether the future that was once envisioned is going to be unattainable.
While any or all of these emotions may arise at various times for newly-diagnosed patients, their initial reaction is often a sense of shock, soon followed by fear. When I first met with a client I’ll call Yolanda, who had been diagnosed with cancer, she first said this:
“All I could think about was how concerned my doctor was when she told me I had cancer. I had never seen this look on her face before, and I just kept thinking that if she was this concerned, I must be in big trouble. I felt like I was on the edge of a cliff and I needed to hang on to something but there was nothing to hang on to. And at any second I might go falling into the darkness.”
During the course of our counseling sessions together, I was able to help Yolanda identify the emotions that she was experiencing, especially those that she thought she ‘shouldn’t’ be feeling (I always begin by kicking the positive-thinking police out of the room). I also supported her as she began to deal with her diagnosis on a day to day basis, including giving the news to her family, making the treatment decision, undergoing surgery and chemotherapy, and making lifestyle changes. However, it was through helping Yolanda to recognize, accept, and cope with the emotions around her illness that she was able to move forward with an empowered attitude.
Highlights of the process of working with clients like Yolanda are described as follows:
Facing the Fear Factor
Yolanda gave voice to her greatest fears about cancer. I encouraged her to express her feelings – beginning with ‘Why me?’ – and told about similar fears experienced by other clients facing cancer. This essentially helped to normalize her reactions, which helped her to open up further about her feelings. I also encouraged her to arm herself with real facts, by asking questions of her treatment team and information-gathering on her own, and at her own pace. Information is an antidote to fear.
Giving Voice to Other Emotions that Arise
As Yolanda faced her fears about her cancer diagnosis, I encouraged her to express other emotions as they arose. For example, taking ownership of anger was an important step for Yolanda as she coped with her diagnosis. She was angry at having to take a break from an active life to go through treatment, and said she wanted to ‘scream at life and how unfair everything is.” During a later session, as she was beginning treatment, she talked about attending a wellness lecture and leaving feeling ashamed that she ‘might have avoided this if I had taken better care of myself.” And during chemotherapy, she expressed sadness that she wasn’t able to ‘be the mother that my kids need me to be.” Yolanda needed the opportunity to express these emotions in a safe, non-judgmental environment, and gain a perspective on her reactions in the context of someone facing a crisis.
Challenging Harmful Beliefs
A medical diagnosis is a stressful event. As patients react to this stress, fundamental beliefs about life are put to the test, many of which may, from a REBT perspective, be irrational and therefore lead to reactions and emotions that are unproductive and self-destructive. I was able to gently help Yolanda to identify beliefs that resulted in, as she said, ‘beating up on myself” and ‘telling myself that I shouldn’t feel the way that I do.” Irrational beliefs common to newly-diagnosed patients include:
- My life will not change unless I want it to.
- I must be available to the people who need me at all times.
- If I live a good life, bad things won’t happen to me.
- If I don’t keep a positive attitude, other people will think I am a failure.
- If I don’t maintain control of my emotions I will collapse.
As Yolanda was ready for me to move from the role of supporting and normalizing her emotional reactions to actively examining her beliefs and understanding the connection with her emotions, I used techniques that are especially helpful with clients facing illness include identifying triggers for fear and other emotions, reframing, challenging either/or thinking, recognizing and replacing negative self-talk, progressive relaxation, and creating health-enhancing affirmations. Again, I can’t emphasize enough the importance of first and foremost being a supportive, listening ear in the true sense of Carl Rogers – non-judgmental, unconditional positive regard. This is what newly-diagnosed clients need the most when they begin in counseling. Motivational Interviewing techniques can also be helpful here in assessing readiness and introducing alternative ways of coping.
A Note About Grief
Newly-diagnosed patients often go through a grieving process, and this can be an essential step in coming to terms with their condition and moving forward with treatment and lifestyle adjustments. When newly-diagnosed patients grieve, they are beginning the process of accepting that a change is occurring in their life. Regardless of the diagnosis, accepting that life is going to be different in some way, and that these changes are out of their hands, is an important step forward. For many newly-diagnosed patients, their diagnosis causes them to take a look at one or more of their basic beliefs about life and to reevaluate them. This may be the first time that they have looked at these beliefs and how they affect their actions and emotional reactions. During this process, assessing a client’s spiritually, and encouraging them to seek spiritual guidance in whatever way is meaningful to them, can be helpful in getting through the grieving process.
Sensitivity to the Influence of Culture and Gender
It is also important for healthcare professionals to be aware of the influence of culture and gender. Cultural background can influence how patients interact with the medical establishment, how they experience and express emotions, and their willingness to accept mental health intervention. Gender can present further complications in expressing the emotions around the illness as well as in getting informed. And in Western culture women tend traditionally to be more active medical consumers than are men.
Working with the Healthcare Team
I often work directly with physicians and, depending on the wishes and permission of the client, will contact the healthcare team to share information and, as needed, to advocate for my client. Where possible, maintaining open communications with healthcare providers, and offering to support them during especially difficult times during and after treatment, can be invaluable to the client. Many healthcare providers also recognize the emotional component as key to enhancing recovery and ongoing compliance.
Prepared for the Road Ahead
Here is what I tell my clients: You are not a diagnosis. Your diagnosis is only part of who you are. Remind yourself every day that you are a fascinating, multi-dimensional creature with a past, a present, and a future that belongs to you and to you alone. Embrace life and your potential to live your life, with all of its triumphs, set-backs, surprises, and detours.
Now, let’s get prepared for the road ahead!
Gary R. McClain, PhD, LMHC, CEAP, is a counselor and consultant in private practice in New York City, with a focus on newly-diagnosed patients. He maintains an award-winning Website, www.JustGotDiagnosed.com. He can be reached at gary@JustGotDiagnosed.com