An example of courage
One patient with TN went to a psychotherapist after three failed microvascular decompression surgeries. At that time he was taking more than the highest recommended dose of carbamazepine, much to the consternation of his neurosurgery team. Before developing trigeminal neuralgia, this gentleman worked as an accountant for a local university. He enjoyed a leadership position in his church. He visited his adult children frequently and he immensely enjoyed their companionship. He dearly loved his wife of many decades and he cherished their time together gardening, traveling, and socializing with friends. However, after years of TN pain, he had greatly reduced his social contact with members of his church and with his children. He and his wife did very little together other than sit at home reading or watching TV. Their conversations largely focused on the patient’s pain.
As he talked about his life, the therapist noticed that the patient tended to wince in pain when they began to discuss difficult topics. When he winced, she tended to instantly stop the discussion, even though the topic was crucially important to finish. The same pattern occurred in the patient’s discussions with his wife. When the topic of discussion focused upon difficult content, the patient would wince and the discussion instantly stopped. The therapist had no sense that the patient was fabricating his experience of pain; it seemed very real. However, when he winced in pain, he did so in a manner that was very dramatic and unusual among the trigeminal neuralgia patients she had treated. When in pain, his whole face contorted and he covered his face with trembling hands. The appearance of it was striking and it demanded silence.
Despite the authenticity of the patient’s pain, his pain-related behavior clearly worked to his benefit in that it allowed him to cut short conversations that dealt with topics he found personally difficult. While the patient could not avoid pain, he could avoid difficult conversations. Before the onset of TN, this patient found difficult conversations especially unpleasant. He had always tended to be a little anxious and conflict avoidant. Nonetheless, he had routinely managed to participate in difficult conversations. His work required him to fire subordinates and restrict the spending of faculty. These work-related duties involved many difficult conversations, yet he was able to admirably perform in the workplace. The patient and his wife had three children and had elected to give up their home of many years in favor of a smaller residence at the time of retirement. Prior to developing TN, the patient was able to discuss matters of concern related to their children and the distribution of retirement assets without retreating from the discussion. The patient and his wife did not always agree on the issues, which was difficult for the patient, but he nonetheless managed to discuss issues of concern until they were resolved to both their satisfaction. After the onset of trigeminal neuralgia, the patient had increasingly avoided difficult conversations with significant others and increasingly focused more on discussions related to his pain.
Once the therapist was certain that the pattern of avoidance existed, she commented on it, and asked the patient whether he had noticed the impact that his wincing had upon conversations with his wife and children and in therapy. He thoughtfully considered the question, then responded that he had never thought about it before but, now that he had, he could see that the conversation entirely stopped when he winced. The therapist asked whether he was ever relieved to be done with the topic of conversation when that occurred. He responded, “Yes, sometimes.” The patient’s wife was attending this session. The therapist asked her if she had noticed the pattern. She thought about it and responded that she often felt shut down by her husband’s pain. She explained that seeing him in pain made her feel that she must do something to help him but she had no idea what she might do to help. She said, “All I know to do is to hug him, but that doesn’t really help.” She asked what the therapist thought she might do to help him. The doctor said that it would help him just to understand how helpless she really felt in response to his pain, that she could do nothing more than be honest with him and do her best to take care of herself, so that he could use his energy to take care of himself. The patient very much loved his wife and was bothered by the thought of her feeling confused and helpless. He had never really understood the extent to which his wife felt intensely and uncomfortably inadequate in the face of his pain. She loved him too, yet she was clearly exhausted by her own self-imposed responsibility to ease his pain. She longed to be free of the responsibility for easing her husband’s pain but, as long as his pain was at the center of their lives, the only way for her to be free of this responsibility was to withdraw from him, which she was trying mightily not to do. They were able to discuss all these emotions, the patient’s fearful focus on his pain and his wife’s guilty obligation to ease his pain, to the point that each gained significant insight.
With time and growing awareness, the patient was able to minimize his wincing while talking with his wife and, more importantly, was able to continue discussions that were not easy for him. The patient was able to release his wife from any expectation that she would ease his pain. The patient openly expressed a sense of responsibility for doing what he could to master his fear of pain. He was able to return to social activities with the understanding that he would responsibly limit his interaction if his pain became overbearing. If he did not feel well enough to be social, he committed to assuming responsibility for communicating this and leaving the social interaction in order to care for himself. In these moments the patient was able to comfort himself through recognition that he would eventually feel better. Being freed from the largely self-imposed responsibility to ease her husband’s pain allowed the patient’s wife to hug him when she felt like being close, rather than out of fear or obligation. All of these changes helped to renew the connection between the patient and his wife.
Within four months of treatment, the patient and his wife were obviously happier, and the patient had cut down his use of carbamazepine to a safe and appropriate level. He accomplished this not because his pain was any less intense but because he had gained courage in the face of his pain, and because his awareness of the ways in which the pain had altered his behavior and identity had increased. All this was accomplished through the executive functions of the patient’s prefrontal cortex successfully inhibiting the fight-or-flight response, which allowed the patient to plan a new way of coping with ongoing pain that honored his self-concept as a loving husband and father. This is what it means to control your pain rather than it controlling you. But getting to the place where your prefrontal cortex is calling the shots takes effort and time.
Discussing courage in the face of excruciating, often uncontrollable pain, can strike a moral tone. This is why so much of this chapter is devoted to the neurophysiology of fear and changing self-perception. The process of losing oneself to chronic facial pain does not involve moral failure. Fear in response to trigeminal neuralgic pain is natural and the brain’s response to fear is immediate and powerful. These neurophysiological changes are not a consequence of failure. However, it is important to recognize that the sense of self changes in response to the fearful experience of chronic facial pain—and this is rarely a good thing. The cycle of change is self-perpetuating as long as the cycle operates out of awareness. All need not be lost, however. Understanding that this process of changing identity commonly occurs in response to pain means that one can consciously and positively protect the sense of self, if one chooses to do so. Without exerting conscious effort, the personal and social forces of chronic facial pain will go unchecked and this typically leads to negative alterations in the sense of self.
If you decide that you would like to make changes in your response to chronic facial pain, be patient with yourself. Understand that you are not just making changes in behavior, beliefs, and attitudes: you are changing brain tissue. Through choice and self-reflection, you are altering the way neurons connect with one another to form the neural matrix that supports your identity and directs your responses to others. These changes take time. Be forgiving of yourself when things don’t go as you had hoped they would—and be very proud of yourself when they do.
About the Author
Dr. Morrow completed a doctorate in Clinical Health Psychology at the University of North Texas and an internship in Clinical Psychology at Indiana University School of Medicine. She has devoted her career to a blend of clinical practice and teaching. Dr. Morrow has expertise in the treatment of acute and chronic pain, as well as stress exacerbated systemic illnesses. She uses a variety of treatment modalities including biofeedback, hypnosis and cognitive-behavioral therapy.