Acknowledging Emotional Reactions in Newly-Diagnosed Patients
Gary R. McClain, PhD
Patients react to a medical diagnosis with a range of emotions, including anger, fear, sadness… and a multitude of other emotions, including in some cases, relief. Patients are individuals, with their own unique set of life experiences and their own ways of coping emotionally with stressful situations. Information plays a role in that having an understanding of one’s medical condition, and a sense of the prognosis as well as how treatment and ongoing life management implications.
Healthcare professionals are not expected to be psychotherapists or counselors, nor to deliver direct mental health services to their patients. On the contrary, attempting to counsel patients without the benefit of being a trained mental health professional can be harmful to the patient and risky for the untrained professional. However, it is important for healthcare professionals to be able to recognize the emotional reactions of their patients for a variety of reasons.
First, patients who are preoccupied with their emotions cannot listen and process information. For example, they can’t hear (they hear but they are not listening) to information about their diagnosis and they can’t ask relevant questions. If the patient’s emotional state is not acknowledged by the healthcare professional, time spent attempting to discuss the facts is wasted. The patient may as a result become more distraught and confused, and may misinterpret what is being said. This may lead to further resistance and emotional disturbance. This can be frustrating and alarming for the healthcare professional.
Secondly, while newly-diagnosed patients may have access to their emotions and express them openly, they may also suppress their feelings. Suppressed feelings ultimately have the same affect on conversations about a medical diagnosis as do directly expressed feelings. Patients struggling with emotions can’t listen or otherwise interact in a way that is going to be productive.
Healthcare professionals, in spite of the challenges and the limitations, do play an important role in helping patients cope emotionally with a diagnosis. For better or worse, patients may, at least when initially diagnosed, have no other emotional support beyond, for example, the members of the healthcare team. Family members may not yet have been brought into the discussions about the diagnosis, or they may not yet be ready themselves to cope with the diagnosis. Patients may not yet have the words they need to discuss their feelings and reactions, and may be depending on their healthcare providers to support them emotionally as they come to grips with how they are feeling.
While patients will over time develop an emotional support network, often with the guidance and encouragement of their healthcare professionals, if they are able to make an emotional connection early on in their diagnosis, they will be that much better prepared to cope as they move forward with their treatment. Healthcare professionals can essentially pave the way for their patients.
The Role of Emotions
Hearing news of a medical diagnosis can bring up a lot of feelings in a newly-diagnosed patient, many of these feelings are uncomfortable and, consequently, may be unacceptable. It is common, for example, to feel sad, scared or angry. After all, a medical diagnosis brings with it the probability of change – in routine, in relationships, in self-image – and human beings are creatures of habit – they are not ‘wired’ to embrace change. A medical diagnosis brings about a sense of uncertainty about the future, and what challenges might soon be presented. And a medical diagnosis can introduce fears about loss, including finances, relationships, favorite activities… if not one’s vision for the future.
Newly-diagnosed experience their emotions in a way that is unique, based on individual factors that include:
- Perceptions of the severity of the diagnosis and its potential affect on their lives
Patients often have minimal information about their condition when they first receive their diagnosis, or erroneous information, or a vague awareness of the condition but not enough of the facts to evaluate it in terms of the implications for their lives. These perceptions – and misperceptions – may lead to an emotional reaction that is not consistent with reality. Alternatively, patients may be well versed in their condition and experience emotions are realistic and consistent with its severity. Either way, perceptions have a direct influence on emotions.
- Their personal style in terms of how they cope emotionally and comfort level in expressing emotions
Some people grow up in families in which emotions are always on the surface, and family members are encouraged to express how they are feeling. In other families, emotions are not so acceptable, and are kept below the surface. Newly-diagnosed patients who don’t have a history of being comfortable with their own feelings will most likely have difficulty talking about, or expressing, how they feel.
- Experiences in coping with illness personally, or with friends or family members
Newly-diagnosed patients who have had a past illness may experience some of the same feelings that they experienced in the past. Having already dealt with a medical diagnosis may have provided them with coping skills upon which they can draw in dealing with a new diagnosis; alternatively, the diagnosis can reignite fears and other feelings that they had hoped not to re-experience. Patients who have helped a friend or family member cope with a medical condition may react similarly. This experience may have imparted a sense of knowing how to cope after having gone through this process with someone else.
The Unanswerable Question That Must Be Asked: Why Me?
Newly-diagnosed patients inevitably ask one question, namely, ‘Why me?’ This may be a medical question, as the newly-diagnosed patient 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 with conditions like lung cancer and Type II diabetes often have the sense that their lifestyle choices may have contributed to their diagnosis. Genetics may play a role in the patients’ thinking if the condition was inherited. The ‘Why me?’ question may be spiritual in nature, as the patient looks at the diagnosis from a spiritual perspective. This may lead to a closer examination of religious beliefs and/or issues of fairness and unfairness. Patients may have a sense of guilt around this question, and wonder if they have the right to even question why they might receive this news versus the diagnosis being given to someone else.
Here is an example of how one patient verbalized this experience:
My first question was, ‘Why me?’ I knew in my mind that it was a question without an answer. But still, I had to ask it. Why was this happening to me? I certainly didn’t think I had done anything to deserve it. And in some ways, I felt guilty for asking it. I mean, bad things can happen to anyone.
The ‘Why me?’ question often leads to an emotional reaction – sadness, anger, disappointment. For many patients, this is the question that ‘opens the floodgate’ to their own emotions, because it is a way of articulating that basic question of fairness and the role of fate. These are core issues that patients grapple with as they begin to process their diagnosis.
As implied in the example, there are multiple explanations for why a patient might be diagnosed with a medical condition. Some explanations may be more acceptable to individual patients than others. Patients often come to the conclusion that, at some level, there really isn’t an answer to the question.
Healthcare professionals can discuss the medical issues with patients. While the medical reasons may be clear, or not so clear, having this discussion can at least help the patient to begin to gain some perspective on the diagnosis. Even learning that there is no medical reason for the diagnosis answers part of the ‘Why me’ question, and can provide reassurance regarding their own level of personal responsibility in the development of the condition. Ultimately, ‘Why me?’ is an existential question – a question of greater meaning from a spiritual perspective. Healthcare professionals are not responsible for answering this question but, on the other hand, discouraging patients from asking it can result in short-circuiting the process of coming to grips with the diagnosis emotionally.
It is recommended that the patient be reminded that:
- Asking ‘Why me?” is a normal reaction for newly-diagnosed patients
- There may, or may not be, specific medical reasons regarding why the condition arose
- Any guilt or self-blaming the patient feels can be discussed in a support group or with a trained professional
- Spiritual questions that arise are best handled with a member of the clergy
What Emotions are Newly-Diagnosed Patients Experiencing?
A medical diagnosis can lead to a wide range of emotions. Some of the key emotions experienced by newly-diagnosed patients are described below.
Fear
A medical diagnosis can result in feelings of fear, for a variety of reasons. One obvious reason for feeling afraid is being faced with the possibility of death. If a diagnosis is life-threatening in some way, as with conditions like cancer or HIV, patients may literally feel that their lives may be at risk. As such, the diagnosis may bring about a feeling of absolute terror at a dreaded possibility.
However, the possibility of death is not the only reason for fear. A diagnosis can completely shake up a newly-diagnosed patient’s assumptions about what the future might hold, and faith that they are on the right path in life. At least temporarily, the diagnosis may leave the patient feeling that they have nothing to count on.
Newly-diagnosed often identify fear as the emotion they feel most strongly, and emphasize that getting beyond ‘the fear factor’ was a key to coping emotionally.
Anger
Anger is a common emotional reaction to a diagnosis. Patients describe anger as a reaction to feeling ‘backed into a corner with no options.’ Anger is essentially a reaction to feeling powerless. But anger is an emotion that, for some patients, is substituted for other emotions. For example, in Western culture, men find it easier and more acceptable to express anger than emotions like sadness and fear. Patients may use other terms for anger, such as frustration.
Sadness
Sadness is a common reaction to a medical diagnosis. As with Leah, it is an emotional reaction to loss. For newly-diagnosed patients, the sense of loss can be devastating as they consider modifications to their day-to-day life, changes in relationships, and possibly a greatly altered future. Patients feeling this level of grief appear to be inconsolable. Another word for sadness that patients may use is disappointment.
Shame
We live in a culture in which the messages about health self-determination, especially in regard to factors like diet, exercise, and avoidance of smoking, are everywhere. We are taught that each of us needs to take responsibility for avoiding chronic illness. While there is a benefit to these messages, the fact is that many people do not do everything in their power to stay as healthy as possible, for reasons that include not knowing what to do and having difficulty managing the willpower to make what would need to be radical changes in their lifestyle. Consequently, individuals diagnosed with at least somewhat preventable conditions like Type II diabetes feel a sense of failure when they are diagnosed, and those around them, including their healthcare providers, may reinforce this sense of failure. The result is a feeling of shame, or guilt (and in our American culture, it is common to place blame on others).
Relief
Patients may have been experiencing symptoms and, in the absence of information, had jumped to conclusions about what their diagnosis might be. Or, the diagnosis may, due to lifestyle choices or heredity, been suspected before it was actually confirmed. In either case, the diagnosis may be met with a sense of relief. Relief may be accompanied by other symptoms, like sadness or guilt.
Guidelines for Helping Patients Talk About Feelings
Here are some guidelines to keep in mind when patients are expressing emotions:
The healthcare provider is a listener, but not a therapist.
Newly-diagnosed patients can greatly benefit from a conversation with an objective person in which they can express how they are feeling. This conversation doesn’t require that the feelings be resolved in any way or that they be provided with advice or a solution that will somehow take the feelings away. In fact, there won’t be any easy answers. However, the listening ear provided by a healthcare professional can be helpful in providing the patient a way to ‘ventilate’ and, with the uncomfortable feelings expressed, be more receptive to hearing and discussing medical information.
Patients know when they are really being listened to.
Listening is an active process. When expressing emotions, patients may feel hesitant to open up, or may feel as if they might be annoying, or going too far, with the listener. Show that you are tuned into the patient through physical and verbal cues. Physical cues include making direct eye contact, making appropriate facial expressions to show an emotional response, and gestures like nodding. Verbal cues include asking questions, and responding briefly with encouragers like ‘ok’ and ‘uh huh.’ Most likely, the more active the healthcare professional is in listening, the more likely the patient will be open and honest.
Using the patient’s name when addressing them makes the conversation more personal, and hearing one’s name over and over can be soothing. Be sure to ask the patient if they prefer to be addressed by their first name or more formally. Often, an older person will prefer to be addressed more formally, especially by a younger healthcare professional.
Reflect feelings to offer support and clarification.
Reflect feelings by repeating the feelings that the patient has described, or how you sense the patient is feeling. The use of reflective listening is a reminder that the healthcare professional is listening, and it helps patients to clarify how they are thinking and feeling.
While patients do not need healthcare professionals to offer advice or otherwise ‘therapize’ them, they can benefit from statements that not only show that the other person is listening but also serve to help them identify their feelings and perceptions.
Talking about feelings is an opportunity to ‘normalize emotions for the patient.
It can be helpful, for example, to gently remind a patient that it is normal to have feelings like sadness and anger over a diagnosis. Patients don’t always accept their own emotions, especially the ‘negative’ emotions like anger, and may feel that they are supposed to be ‘thinking positive’ or be keeping their emotions to themselves. So when patients are told that it is normal to have a range of emotions, this helps them to accept their feelings and encourages them to talk more.
Listening is a way of honoring another person.
Listening to a patient talk about their feelings can sometimes cause their healthcare professionals to feel helpless. After all, it is only normal to want to ‘fix’ someone who is suffering. Deeply felt, and expressed emotions, can be especially difficult to listen to without feeling pressure to take some kind of action to help them to go away. However, the value of listening – without judgment, without interpretation, and without feeling the responsibility to take away the pain – cannot be underestimated. What patients need is for someone to hear and acknowledge their emotional reactions.
Often, their families are dealing with their own reactions to the diagnosis and cannot listen to how the patient is feeling out of wanting to avoid feeling even more helpless. Instead, they may be telling the patient to ‘think positive’ or reassuring them that ‘everything is going to get better’ when the patient is not at all convinced of this. This leaves the patient with a lot of feelings but no outlet for expressing these feelings. The healthcare provider, perceived as objective but also caring, can bridge this gap.
Most likely, a patient will come away from this discussion with the satisfaction that she had been listened to and that her feelings were valid.
The Influence of Culture and Gender
As discussed previously, there are a range of factors that affect how individuals express, or don’t express, emotions, including past experience and family background. However, it is also important for healthcare professionals to be aware of the influence of culture and gender. These factors can influence how patients experience emotions, how they express them, and their willingness to accept mental health intervention. While the differences among different groups are too complicated to describe in detail, being aware of the fact that differences do exist, and attempting to be as sensitive as possible to these differences, will greatly enhance communications around emotional issues between patients and healthcare professionals.
Feelings are expressed differently among cultural groups. In some cultures, emotions are very much on the surface, such that it might be assumed that an individual is feeling emotions much more intensely than they are. Or, conversely, individuals in another culture might be highly reserved, and these individuals might be experiencing emotions much more deeply than they appear to be. In some cultures, it is acceptable to talk about emotions and admit to having uncomfortable feelings while, in other cultures, this would be a sign of weakness. Furthermore, an individual from one culture might be uncomfortable to speaking about what are perceived as personal issues with someone from another culture – they might automatically assume that they will be misunderstood or judged.
While it is difficult to control all of the issues that might arise in working with someone from another culture, sensitivity to these issues will go a long way toward enhancing communications. It might be helpful to do some research on the other culture, or try to talk to someone from that culture, to learn more about how emotions are expressed, and any cultural barriers that might exist that could interfere with discussions about emotions. Also, simply asking a patient if they are uncomfortable with talking about their feelings can help to prevent further discomfort and embarrassment – and offending the patient – before it occurs.
Gender can present further complications in discussing emotions. In Western culture, as well as in other cultures, men traditionally are much less comfortable talking about their emotions than are women. Traditionally, expressing emotions has been considered a sign of weakness for men. This has also been true in many other cultures. Also, men traditionally are less likely to admit what they fear might be perceived as weakness to a woman, and women may feel more comfortable having these conversations with other women.
As with culture, it is important to be sensitive to gender issues when emotions are involved. Gender roles are changing. As the world has become more psychologically sophisticated, men and women are more able to articulate feelings and feel more comfortable with this process.
When working with anyone who is from a different culture than oneself, it is important to go into the situation cautiously, but with an open mind:
- Avoid stereotyping the other person in any way by making assumptions about their comfort level with discussing emotional issues.
- Make it clear that you are willing to discuss the issues and concerns that they might have.
- Don’t attempt to ‘help’ them talk about emotions through direct and persistent questioning.
- Consider enlisting the assistance of another professional who represents, or is familiar with, the patient’s culture.
Gary R. McClain, PhD, is a therapist, educator, and consultant in New York City, with a specialty in working with patients who are newly-diagnosed with chronic or catastrophic medical conditions This article was adapted from his book, “After the Diagnosis: How Patients React and How To Help Them Cope (Delmar, 2010), a supplementary textbook for nursing education. He maintains a Website, www.JustGotDiagnosed.com