Pain affects you, and your relationships
Pain is both a private experience and a social one. It is undeniably true that the patient has a private experience of pain that cannot be shared. However, the patient’s private experience of pain inevitably results in behavioral changes that others can see and this creates the patient’s social experience of pain. Once pain has become a social experience, it impacts not only the patient, but also relationships with significant others in the patient’s life. When pain patients are connected to significant others, as most are, their experience of pain is importantly and unavoidably shared.
All pain behavior has a communicative effect. Wincing, groaning, pained facial expressions, anxiously touching the face, refusing to be touched, interpersonally withdrawing, irritability, inability to participate in household chores or employment, refusal to participate in activities out of fear of pain, indeed, any pain-related behavior that touches the life of someone in relationship to the patient is, in part, an act of communication. Even when patients are determined not to communicate about their pain – even when they are determined to keep their experience of pain internalized and private – their behavior is unavoidably communicative, as much as any words could be.
Pain and significant others
Significant others cannot help but recognize pain behavior as meaningful. It says something about the status of their partner and this does not typically elicit indifference from a devoted partner. Complicating things is the fact that pain behavior often includes an unspoken set of expectations of what others will do in response. Sometimes these expectations are unconscious or only partially conscious. Significant others who witness pain behavior typically perceive expectations in the patient’s behavior, even in cases when the patient did not consciously expect anything in response.
Sometimes the significant other perceives expectations that are actually derived from their own fear of being inadequate or overwhelmed, although they may not recognize this. The meaning that patients and significant others attach to pain behavior is thus inevitably complex. This is in large part because pain-related communication is typically nonverbal and rarely occurs in the context of full awareness. And, as is often the case, lack of awareness creates problems. Common unacknowledged pain-related patterns of communication are discussed in this article.
The article closes with tips that are intended to facilitate mindful pain related communication between patients and significant others so that living with chronic facial pain does not degrade important relationships. Focus is placed upon romantic relationships. For the sake of clarity, the person with a facial pain diagnosis is referred to as the patient. Persons in relationship to the patient are referred to as significant others or partners.
Pain is not purely physical
It is important to understand, and accept, that pain is not a simple straightforward physiological event. This is not the same thing as saying that the pain is “all in your head,” something most patients fear others will assume. Even in the case of trigeminal neuralgia, an undeniably vicious “real” pain, the patient’s experience of pain is importantly influenced by its social aspects.
As time goes on, the patient’s experience of pain, the behavioral changes that the pain brings about, and the reactions of significant others to the patient’s pain behavior, influence the patient’s private pain experience in very real ways. We know this happens.
Researchers have discovered that interpersonal dynamics affect one’s tolerance of pain and one’s experience of pain intensity apart from the diagnosis that underlies the pain. For example, research shows that partnered pain patients generally report less pain; they function better and are less likely to suffer with depression than unpartnered patients. Studies show that chronic pain patients experience lower levels of pain on days that begin with a sense of being happily connected to their partners; thus, relationship status can affect the patient’s experience of pain on a day to day basis.
However, the research suggests that the pain-related advantages of being partnered only accrue to those who are in satisfying relationships, and even then, not in every case. When relationships are weak and distressed, pain patients tend to do poorly. They report more frequent and intense pain and show higher levels of disability.
This may seem obvious on the surface, but the more you think about it, the more interesting it becomes. These researchers controlled for diagnosis. That means that patients with the same diagnosis, who had the same level of pathophysiology, experienced physical distress as a function of their relationship status, not their physical disorder. That is profoundly important and the underlying causes are not at all simple or obvious.
Catastrophic thinking: when chronic pain goes off the deep end
We can define catastrophic thinking as the tendency to overestimate the likelihood of negative events occurring. To put it differently, catastrophic thinking involves worrying about all possible negative outcomes as if all were equally likely to occur. Thus, the logic that underlies catastrophic thinking is inherently distorted. Catastrophic thinking is common in chronic pain patients, regardless of the disorder that causes the pain. However, catastrophic thinking is especially problematic in facial pain patients.
Facial pain creates a nightmare scenario for catastrophic thinking. The trigeminal neuralgia patient most often has a favorable response to neuroleptic medication upon first diagnosis, but this favorable response does not typically last. With time doses must be increased to achieve pain relief, and eventually, the patient reaches the maximum dose allowed.
When patients reach the maximum dosage of neuroleptic, physicians typically turn to surgery. Surgery is often helpful, but with time, repeat surgeries are usually necessary to maintain pain relief. In most cases, there is a limit to the number of surgeries that can be successfully and safely employed. Patients know this. Thus, in very real ways, experience teaches the patient that the other shoe always drops.
This scenario creates a cognitive and emotional outlook that involves catastrophic expectations for many patients. Still, the psychological challenges of trigeminal neuralgia (and other facial neuropathies) do not affect all patients in the same way. Some patients are relatively resilient and rarely become overwhelmed with catastrophic thinking. Other patients struggle with catastrophic thinking that is difficult or impossible to control. Why is this? Both anxiety and depression are associated with catastrophic thinking. Patients who struggle most with catastrophic thinking often have undiagnosed and/or untreated anxiety or depression.
These patients frequently resist the idea that they could be depressed or anxious out of fear that a psychiatric diagnosis would lead others to view their pain as imaginary or relatively insignificant. Patients who have a predisposition toward anxiety or depression often become depressed or anxious in the process of dealing with chronic facial pain. When this happens, it is not something that the patient could have easily avoided. The challenge of dealing with intense chronic pain that has an unpredictable waxing and waning course can activate the underlying genetic predisposition to anxiety or depression in predisposed individuals.
This heightened risk for depression and anxiety is present both for the patient and for their partner, who is also confronted by the demands of chronic pain, albeit from the perspective of a supportive loved one. When depression or anxiety goes untreated, catastrophic thinking will be robust yet difficult to recognize. Individuals understandably resist recognizing their catastrophic thinking as irrational or destructive because they fear that if they are not hypervigilant to potential catastrophe, they will be caught unprepared and unprotected.
This hypervigilant approach might make sense if it were not for the fact that maintaining hypervigilance requires enormous energy. Considering that some feared outcomes are highly unlikely to occur, others are not as threatening as imagined, and still others cannot be avoided with any amount of preparation, expending the energy required to sustain a hypervigilant outlook is inefficiently taxing. Partners who are confronted with their loved one’s catastrophic thinking understandably feel compelled to soothe their loved one, but their efforts inevitably fail over the long run. This is because catastrophic thinking is symptomatic of a cognitive disorder that is not amenable to change by reason.
Neither will nurturance and understanding alone relieve the depression or anxiety that underlie catastrophic thinking. Psychotherapy is typically useful in identifying and eliminating catastrophic thoughts. Medications are often necessary to treat anxiety and depression in order to support this psychotherapeutic work. When partners of chronic pain patients respond to catastrophic thinking with an effort to soothe the patient, without also challenging the patient’s catastrophic thinking and resistance to treatment, we refer to this as solicitous behavior. Although it is somewhat counterintuitive, it is not helpful to patients when their partners treat them solicitously.
When caring hurts
Happily partnered pain patients with solicitous partners report greater pain severity than happily partnered patients with non-solicitous partners. Conversely, when relationship satisfaction is low, the association between the patient’s reported pain and the solicitousness of their partner disappears. In other words, when the pain patient is in an unhappy relationship, there is no connection between the solicitous attention of their partner and the degree of their physical discomfort.
Why this occurs is discussed later in this article. For now, the most important thing to understand is that being flawlessly attentive to a partner with pain is actually unhelpful and will likely result in the partner experiencing greater physical discomfort. The reasons for this are important to understand. Optimal functioning in the context of chronic pain depends to a very great degree on the sense of oneself as capable and influential in one’s own life. We refer to this competency as having a sense of personal agency.
Dependency on one’s significant other is destructive to self-esteem because it reduces the patient’s sense of personal agency. The more global the dependency, the more the dependency threatens the patient’s sense of personal agency. This is true even when the dependency is unavoidable, as it is in cases of advanced Parkinson’s disease and multiple sclerosis.
Dependency is not tantamount to closeness or loving. In fact, when partners must provide round the clock custodial care for extended periods of time, the dependency this creates can reduce the relationship to a patient-caretaker connection that is characterized by limited emotional intimacy. Interpersonal remoteness is not an inevitable outcome of relationships that involve extensive custodial demands, but it is a common one. Mental health professional support is beneficial to avoid this outcome.
In cases of facial pain, patients are often globally dependent upon their partners following surgery. It is important for patients to move away from this extensive dependency as soon as possible to protect their self-esteem and the primary relationship. Doing so typically involves confronting significant fear of re-injury and functional limitation on the part of both the patient and their partner.
While the move toward independence needs to be as expeditious as possible, it is understandable for the patient who is experiencing severe pain and discomfort to hope that their partner will regard their suffering as significant and respond with genuine compassion. Thus, one is justified in asking when and why caring for one’s partner becomes destructive and how to avoid this outcome.
Solicitous individuals are consciously motivated to ease the discomfort of their partners who suffer with chronic pain. The solicitous partner is also unconsciously motivated to ease their own discomfort in response to their partner’s suffering. The reflexive and consistent attention solicitous individuals pay to their partner typically involves an effort to aid their partner in identifying and avoiding situations that provoke pain.
This effort has unintended negative effects. Nonetheless, the partner’s solicitous helping behavior is communicative in the sense that it demonstrates compassionate concern, and, as a result, the solicitousness is often welcomed. This creates a dynamic where solicitous behavior is more likely to occur. The problem with this dynamic is that it fosters catastrophic thinking in both the patient and their partner. The devolution into catastrophic thinking is far more likely to occur when either partner suffers with depression or anxiety, whether diagnosed or not.
With long lasting episodically intense chronic pain, many individuals who would not otherwise have developed depression or anxiety begin to emotionally struggle and their thinking becomes catastrophic. Over time, as both partners focus progressively more on avoiding potential triggers for pain, their shared hypervigilance becomes an organizing principle of the relationship. The couple’s shared hypervigilance is intended to avoid catastrophic outcome.
Because catastrophic thinking is associated with greater pain intensity and increased disability, the patient functions less and less well as time passes. Their partner becomes more solicitous in an attempt to halt the patient’s decline. The result is a downward spiral toward disability on the part of the patient and exhaustion on the part of their partner. The most relationally lethal aspect of this dynamic is that the two partners become merged in a way that destroys the uniqueness of each person. This happens because both individuals give up activities that they find meaningful and enjoyable in deference to fighting the battle against pain. The very qualities that drew these individuals to one another are diminished as their roles devolve into the rigidly defined functions of patient and caretaker.
Trigeminal neuralgia presents great challenges to relationships because of its associated pain intensity and typically episodic nature. Trigeminal neuralgia pain is vicious. When it strikes, the patient is inevitably consumed by it and it is obvious to anyone in proximity to the patient that something awful has transpired. When significant others witness these attacks they feel understandably frightened and inadequate. What loving partner would not want to avoid this experience both for themselves and their significant other?
The painful attacks of classic trigeminal neuralgia are typically followed by a pain free period, the duration of which is unpredictable. This creates a psychological context wherein both members of the relationship are vigilant to the return of pain and are motivated to do whatever possible to avoid its return. As this dynamic expands over time, the pain-free periods become contaminated with hypervigilance and fear. The relationship is made unrewarding and toxic as both partners lose their capacity for connection outside of the context of fear.
Both partners’ energies are consumed by hypervigilance as they watch and wait for the next attack of facial pain. Despite every effort, the pain of trigeminal neuralgia typically does return. Thus, it is not hard to imagine how this could lead both individuals to become entirely focused on avoiding pain triggers, some of which are unknowable, and some of which are inconsistent in their triggering effects. It is in this way that chronic facial pain can take over a healthy relationship, distort it, and devitalize it.
When relationships are unsatisfying and conflicted, the risks of devitalization in response to chronic pain are proportionally greater than for persons in healthy relationships. In dysfunctional relationships, the partner’s solicitous behavior is contaminated with anger and resentment from the start. Because the patient has historically doubted their partner’s commitment to the relationship, the partner’s response to the patient’s pain behavior is viewed as an indicator of the relationship’s status.
The context of pain gives rise to a series of interpersonal tests. In this way solicitous behavior is more than an effort to ease suffering. From the start solicitous behavior is rife with meaning that is wholly unrelated to pain.
Pain behavior as a plea or a punishment
Most psychologists keenly focus on childhood history as an important predictor of adult behavior. This is because we develop our core sense-of-self, our identity, during childhood. We learn to trust during childhood. We learn to perceive the world as fundamentally safe or threatening during our earliest years.
We learn to see ourselves as capable or inadequate. If we are treated empathically by those who care for us, we learn to feel empathy for others. If we are loved, we learn to love. We learn all these traits in the course of our relationship to primary caregivers during our developmental years. If we experience significant abuse or neglect at the hands of our primary caregivers during these developmental years, we learn that emotional closeness brings pain. We learn that it is dangerous to trust. We learn that people are self-serving and must be manipulated in order to secure our interpersonal needs. All of this learning occurs as a function of early experience.
These lessons are not conscious; they are not chosen by the child; they are not the responsibility of the child. Hurtful early experiences leave their mark in the structure of identity like so many cuts. As we grow, we learn ways to cover these cuts, to compensate for them, and these lessons shape our personality. If we feel threatened, we learn to protect ourselves with arrogance. If we fear abandonment (an almost universal fear among persons who have experienced early emotional trauma) we learn emotional ways of capturing the people we most cherish. We become possessive and controlling.
The effects of childhood trauma are exceedingly complex and highly distinctive from person to person. Many factors are at play in the development of identity, and the result is tremendous diversity person to person. Nonetheless, those who have endured childhood neglect or trauma typically struggle to form satisfying relationships as adults. When individuals with histories of early trauma develop chronic pain, their medical course is inevitably complicated by psychological overlay. Their relationships are powerfully affected as well and this in turn further complicates medical course. When both partners suffered early abuse, as is often the case, the challenges associated with either partner experiencing chronic pain are enormous.
As previously explained, persons with histories of childhood trauma most often fear abandonment. This is understandable. The individual’s childhood relational experiences taught them that people upon whom you depend will hurt you. You cannot trust that others will be consistent in their attachment. When you are not useful, when your needs conflict with those of your loved one, you are dispensable. Imagine the despair such a person might feel in relationship to another when the intense pain of trigeminal neuralgia strikes.
In the moment of painful suffering patients can offer very little, perhaps nothing, to “earn” the love and affection of their partner. Thus, it feels as if the pain has rendered them useless. This is a terrifying experience for an individual who lives in more or less constant fear of not being good enough to secure the affection of their partner. When partners respond to their loved one’s suffering with nurturance, this eases the patient’s terror of being abandoned. This has nothing to do with pain; it is purely psychological. But it is attached to the experience of pain by context. The attentive partner not only meets the patient’s need to be nurtured in the moment of experiencing pain, they meet the patient’s unconscious longing for succorance that is residual from a traumatic childhood where the need to be loved and protected went unmet.
This dynamic creates deep confusion because the experience of pain, and the need to be cared for are confounded. Adding to this complexity is the fact that individuals are never fully conscious of these psychological dynamics. They are only aware that the experience of being comforted in the context of pain eases their suffering. All of this psychological complexity is simply attributed to the experience of easing physical pain. And, over time, both the patient and the partner confuse emotional suffering with physiological pain. This can substantially complicate treatment.
The confounding of emotional suffering and pain often leads to use of unnecessary medications and unnecessary invasive intervention that do nothing to ease suffering because these treatments are directed at the wrong cause for suffering. Once the experience of pain is blended with the emotional longing for nurturance, relationships inevitably suffer. Pain behavior becomes intensely communicative but indirect and inaccurately representative of underlying emotion. The patient expresses their longing to be loved and held in esteem through their pain behavior. The partner may respond solicitously in an effort to ease long standing relational conflict or their own fears about abandonment. The unfortunate effect of this is that pain behavior usurps the couple’s communication process.
Appeals for nurturance and obligatory solicitousness are wrapped up in the language of pain behavior and thereby obscured from awareness. Real interpersonal problems go unaddressed. With time, both partners begin to feel exhausted and resentful. The patient may sense a growing distance from their partner. This can generate a panicky fear of abandonment, which exhausts the body and lowers resistance to pain. As panic builds, pain and emotional suffering increase; along with this intensifying panic, pain behavior becomes more dramatic.
The patient’s pain behavior at once constitutes an unconscious plea to be comforted and a test of their partner’s commitment and love. The partner begins to feel that nothing they do helps; but, they are captured by the expectation that they will go on trying. These dynamics typically lead to unacknowledged anger on the part of both partners. The self-fulfilling prophecy that no one really cares, or remains connected, is thus brought to bear. Frustration, fear, and anger build in both partners when relationships are overcome by a distorted focus on pain and the related failure to see deeper interpersonal problems.
In the context of escalating negative emotion, the patient’s pain behavior and the partner’s response to it can take on punishing properties. Again, this dynamic typically operates at an unconscious level for both partners. By this point in the life of the relationship, pain behavior has become wholly detached from the physiology of pain, although neither partner typically sees this. Pain behavior has become principally communicative and is no longer an accurate indication of underlying, associated physical discomfort. But again, this is not something that either partner fully knows. Pain behavior functions as a means to control the partner, and at times, pain behavior functions to punish the partner for perceived slights. Refusal to join the partner in shared activities because of pain, refusal to accompany the partner on visits to extended family because of pain, refusal to share time with children because of pain – these behaviors and others can function as punishment for perceived slights.
The partner’s refusal to spend time with the patient, refusal to engage the patient in recreational activity, care-taking that is obligatorily robotic, heightened criticism about the patient’s limitations – these behaviors and others can also be punishing. These dynamics are complicated by the fact that the patient likely has some genuine experience of pain, but appropriate support during these episodes is not forthcoming. The authentic connection that would generate a caring response has been destroyed by the erosive effects of pain behavior that has taken on a life of its own in a dysfunctional relationship.
There is no solution for these problems apart from awareness. Once mired in relational conflict, professional help in the form of psychotherapy is typically required to overcome the muddled communication that dominates the relationship.
Tips for managing chronic pain in primary relationships
1. If you have a history of childhood abuse or neglect, and you haven’t talked this out in therapy, you need to do this. It is not necessary for the therapy to focus on your experience of pain in order to help your pain.
2. If you suspect that you have depression or anxiety, it is essential to get treatment. Successful treatment may necessitate use of a medication. While primary care physicians can successfully treat mild depression or anxiety, moderate or severe symptoms should be evaluated and treated by psychiatry. Again, it is not necessary for this kind of treatment to focus on your pain in order to help your pain. Mild depression and anxiety can be successfully treated without medication through participation in cognitive behavioral therapy.
3. Catastrophic thinking related to the experience of pain needs to be treated in psychotherapy. Treatment is optimal when the psychotherapist has experience in pain management.
4. Keep in mind that catastrophic thinking can develop in the partner as well as the pain patient. When this occurs, it is just as important for the partner to seek treatment as it is when catastrophic thinking develops in the pain patient.
5. Remember that it is hard to see catastrophic thinking as distorted when you are in the middle of it. If your partner suggests that you are worrying too much, try not to see this as unsympathetic. Your partner may be right. The only way to know for sure is to engage in the work of psychotherapy. This work may not need to last longer than a few sessions
6. Awareness is key to managing chronic pain. Even in the best of circumstances, where relationship satisfaction is high, lack of emotional awareness can create a context where pain behavior usurps the communication process and threatens the relationship. This inevitably leads to a cycle of increasing pain and disability. While it is very difficult to do, it is essential to differentiate the emotions of fear, disappointment, and anger within the relationship from those emotions that arise in response to pain. This will keep pain from taking over a central position in the relationship.
7. It is natural to feel comforted when your partner obviously understands that you are in pain. The experience of pain can be emotionally isolating. No one can feel your pain as you do and this can lead to loneliness. Even in the context of a healthy primary relationship the unshareable nature of pain is deflating. Thus, when your partner sees and acknowledges your physical suffering this can feel connecting and emotionally relieving. Nonetheless, it is critically important that you continue to seek connection in ways that have nothing to do with pain.
8. The crushing loneliness of pain is an important issue in its own right, and it is often helpful to talk about it. These discussions are most helpful in the context of psychotherapy with a pain management specialist. The therapist has discussed the experience of chronic pain with many people. She or he has developed a specialized understanding of the difficult emotions that are universal among chronic pain patients. You do not have to take care of the therapist. There is no expectation of reciprocity. This eliminates the guilt that can accompany frequent discussions of pain-related negative emotions with your partner while at the same time easing the loneliness of chronic pain.
9. Mind-reading is error prone. Do not expect your partner to know what you need or feel without verbally expressing your emotions. Work to identify what it is that you are feeling then express these emotions in words.
10. Do not let conversations become dominated by discussions of your pain. In every primary relationship there is a shared emotional life that is both complex and impossible to fully understand without honest conversation. Pain-related experience is but one part of this emotional life. If conversations frequently focus on your pain to the exclusion of other topics, the relationship will be starved of the resources needed to keep it alive.
11. Do not allow your partner to do for you what you are capable of doing for yourself. Do not do for your partner what you know they can do for themselves as a means to communicate your concern. Communicate your concern with words. Commit to having a loving honest conversation about the problem at hand to determine what is reasonable to expect of one another, especially when the limits of the patient’s ability are not clear. The point is to shield the patient against the loss of personal agency and to protect the partner from falling into the exclusive role of primary caregiver.
12. When you are experiencing pain, it is your responsibility to do what is necessary to secure comfort. This may take the form of verbally asking for help. When asking for help, be as specific as possible about what it is you need. Being responsible in the context of chronic pain may take the form of limiting your activity without expecting your partner to similarly limit their activity. It will certainly entail doing things that you are generally frightened to do as much as it will entail avoiding things that you know will cause you discomfort.
13 Do not confuse care-taking with love. While these things are often related, they are not the same.
14. A loving partner will attempt to remain connected as you experience the intense pain of trigeminal neuralgia. Understand that this experience is as terrifying for them as it is for you. Their experience of helplessness can be as great as yours. As soon as you are able to authentically move away from focus upon your pain, do so. This will be reassuring for you and your partner.
15. Lastly, remain as functional as you possibly can. Work to retain activities that bring you pleasure and infuse your life with meaning. Chronic pain can be psychologically cancerous. The psychological effects of chronic pain can overtake your life and reduce you to being nothing more than a pain patient. The threat of this occurring is universal among chronic pain patients. Losing yourself to pain is not a product of emotional weakness or egocentricity. You must work to prevent this process from unfolding, and this work very often requires professional support. Reaching out for professional help is not a sign of failure. It is a sign of personal power.
By Dr. Leesa Scott-Morrow