When feelings hurt: Learning how to talk with families about the role of emotions in physical symptoms

Abstract

Emotions are at the core of all human experiences, but talking about emotions is challenging, particularly in the context of medical encounters focused on somatic symptoms. Transparent, normalizing, and validating communication about the mind-body connection opens the door for respectful, open dialogue between the family and members of the care team, acknowledging the lived experience that is brought to the table in understanding the problem and co-creating a solution.

Emotions represent complex states of mind, intertwined with our circumstances, motivations, moods, bodily sensations, relationships, and much more. In medical settings with patients and their families, it is easy to discuss how physical symptoms affect emotions, but much more difficult to talk about how involuntary physical symptoms are affected by emotions and distress (somatic symptoms). Somatic symptoms are a universally experienced spectrum of sensations that accompany health and disease that can range from manifestations of everyday emotions (e.g., tears) to clinically significant symptoms that impair functioning (e.g., non-epileptic seizures related to acute or chronic stressors), see Table 1 (1). Similar to the discomfort experienced in the clinical encounter, in the research literature, many authors dance around the notion of emotions influencing symptoms, and in some cases completely reject the term somatization in relation to certain patient populations (2). Nuance is required in choosing words and analogies during the therapeutic encounter to sensitively address somatic symptoms; what follows are some suggestions on how to help children and families understand this complex experience.

Table 1.

Common presentations of somatic symptom disorder and conversion disorder in children and adolescents

Somatic symptom disorder (SSD)	Conversion disorder (CD)
Abdominal pain or bloating	Non-epileptic seizures
Fatigue	Weakness or paralysis
Nausea	Difficulties with balance or gait
Headache	Tingling, numbness
Musculoskeletal pain	Dizziness and/or fainting
Shortness of breath	Abnormal movements (e.g., tremor)
Heart palpitations	Memory or concentration difficulties
Bowel problems (loose stools, constipation)	Vision impairments
Globus sensation	Speech problems

These lists are not exhaustive. SSD and CD can occur on their own, following an illness/injury (e.g., persistent headaches following a concussion, chronic abdominal pain after gastroenteritis), or in conjunction with a diagnosed illness/injury (e.g., epilepsy with conversion disorder and Celiac disease with an element of somatization)

FRAMEWORKS FOR UNDERSTANDING SOMATIC SYMPTOMS

Physical symptoms that are associated with and influenced by emotional experiences are common (1). Chronic stress increases susceptibility to illness, distress can occur in response to an unpleasant symptom, and symptoms can be brought on by strong emotions (e.g., heart racing during panic). Genetics, illness and injury, trauma, social positions, individual and cultural identity, and psychological factors (e.g., attention and learning) may set up a vulnerability that interacts with emotions to heighten somatic sensations (3).

Although somatization is often acknowledged among clinicians, talking about it is difficult, sometimes due to the confusion, stigma, and the fear that patients may feel blamed (4). Concepts such as Occam’s razor, where one should account for an observed phenomenon in the simplest way possible and not look for multiple explanations (5), do not account for the spectrum whereby somatic symptoms can constitute a component of and co-exist with all medical conditions. New diagnostic categories such as primary pain disorders in ICD-11 begin to reflect a more nuanced understanding that acknowledges multiple interacting etiological factors, rather than a mind or body condition (6). However, even biopsychosocial explanations of the pathogenesis of somatic symptoms fall into the trap of mind-body dualism by prioritizing neurobiological explanations for emotional phenomena (4). This reinforces for families that symptom legitimacy is based on biological and/or observable causes, not suffering. Therefore, it is equally, if not more, important to attend to the subjective, lived experience of the patient, the meaning they make of such an experience, and the sociocultural world in which they exist.

UNIQUE CONSIDERATIONS FOR THE PAEDIATRIC CONTEXT

Somatic symptoms represent a significant challenge for patients, parents, providers, and the healthcare system alike. Families often struggle with feeling dismissed, delegitimized, misunderstood, and worry that something sinister is being missed (7). Parents, fearing for their child’s well-being, understandably often pursue additional diagnostic tests, emergency services, and second opinions, leading to pejorative labels of being frequent flyers, catastrophizers, and doctor-shopping. Not wishing to offend, clinicians grapple with finding the right words to talk about these symptoms, searching for a common language and trying to co-develop an understanding of the problem and a treatment plan with the family. There is a feeling of being stuck for all involved (8).

Accepting the mind-body connection requires tolerating uncertainty and complexity. This is a challenge particularly for children, whose developing cognitive abilities lend more to concrete, cause-and-effect explanations for symptoms. It can also be confusing for parents, especially if the observable symptoms are a mismatch to a child’s self-report of emotion, or if the symptom is not observable at all. A person-centered approach that allows for the patient’s own understanding of the cause of their symptoms (or, as is often case, sitting with them in their own confusion and distress) may be critical to moving forward. This may involve multiple steps, undertaken over multiple appointments; see Table 2 for example scripts to support these conversations.

Table 2.

Examples of language to use to engage with families about somatic symptoms

Concept	Language examples
3-step process for eliciting families’ understanding of their symptoms	First, elicit the child’s (and parent’s) understanding of what is happening in their body and mind using open-ended questions: “Tell me what it’s been like living with this symptom. What do you think is going on?” Second, reflect back a coherent, organized summary based on the patient’s language and narrative, checking in to ensure you have understood them correctly: “Your ankle hurts so much, but you have been a fighter. Most of the time, you keep pushing yourself to dance anyway, but the pain actually gets worse instead of better. This is so frustrating, because this problem is getting in the way of you achieving your dreams. Working so hard is burning you out. There are now more and more days where you just become quiet and want to be left alone. It’s hard to even let your dad help you out. Am I understanding it right?” Finally, gently enlist their curiosity about next steps to help co-construct the assessment journey: “It sounds to me like you have a big unanswered question about why this pain isn’t going away. You have tried so many things and yet I can see how much you still hurt.”
Normalizing somatization	“All emotions are felt in the body. For example: • Blushing when embarrassed • Butterflies in the stomach when nervous • Breathing fast and heart racing when scared • Feeling tired or like your body is heavy when sad • Energetic when excited • Feeling hot when angry This experience is called somatization. Everyone somatizes. It’s universal and normal. There is a reason for somatization. Bodily sensations give us information about what we want or need so we can quickly and automatically take action. Sometimes it is hard to know whether a bodily sensation is because of emotions, an illness/injury, or both. When somatization stops you from being able to do everyday tasks, there are treatments that can help.”
Explaining the mind-body connection	“Your brain is like the control room for your body. It takes in all the messages sent from everywhere in your body, tries to figure it out, and then sends messages back to your body to tell it what to do. Everything that happens in your body, whether it’s your stomach telling you it’s time to eat, your foot telling you your shoes are too tight, your skin telling you the stove you are touching is hot… it all gets processed by your nervous system. That same nervous system is also what send signals about stress and emotions. If your nervous system gets a message about something that might be important to you (e.g., an upcoming exam, a friend that’s mad at you, losing a pet), it sends a message back to your body to do something to cope with it. For example, if there is stress in your environment, your body might activate the fight-flight-or-freeze system, which prepares you for the stress by tensing your muscles, slowing your digestion, increasing your breathing. If you have stress all the time, your body might feel tired from being in fight-flight-or-freeze mode all the time. You might not even notice the stress because you are so used to your body always having these physical symptoms. Or the stress might make other symptoms or illnesses worse. If your nervous system is already busy fighting off a sickness, even a small stress might feel like a lot. Also, remember that positive stress is still stress! You might be really excited about that upcoming soccer game, and you can still feel stressed about wanting to do well or not knowing how it’s going to turn out. It sounds like your nervous system is working overtime trying to process so much information. What kinds of signals do you think your nervous system is getting from your body?”
Introducing treatment	“Because the mind-body connection is so complex, treatment usually includes lots of different parts. For many people, treatment includes learning coping strategies that can hack your mind-body connection (e.g., skills that can activate your parasympathetic nervous system, which calms down your fight-flight-or-freeze response), medication or other medical tests, physiotherapy, learning to pace yourself as you return to activities, and identifying and managing stressors in your life. This is also important because you are not just a body experiencing symptoms, you are a whole person! And when symptoms get in the way of being able to do things you want or need to do, it makes sense that would feel stressful, frustrating, lonely, or sad. Working with a mental health provider can help with all the feelings that come with living with somatic symptoms. This is important because if we don’t deal with those feelings, they can make symptoms worse—we can work together to find a way to break that cycle. It can be hard to figure out where to start when there’s so much going on. If you woke up tomorrow and things were better with your somatic symptoms, how would you know? What would life look like?”

In paediatrics, clinicians have the challenge and the privilege of holding space for the emotional experience of the patient and their family. Inviting parents to share the role of emotions in their family of origin and culture may offer insights to support your work. Helping parents understand the situational, intergenerational, and societal influences that shape how they respond to emotions may address the guilt or shame that many parents experience at the suggestion that emotions are involved in their child’s symptoms. It can be beneficial to support parental understanding that the symptoms are no one’s fault, but that all members of the family can be actively involved in supporting recovery. It is common for different family members to be at different stages of their understanding and acceptance of the mind-body connection. Individual meetings with parents may help to hear their concerns, and process the grief, helplessness, and trauma from watching their child suffer that can make it difficult to accept a somatic diagnosis. It can also be helpful to introduce the concept of “walking two paths” (9), describing how psychological and rehabilitation therapies can occur simultaneously with medical investigations or treatments. Families may be reluctant to engage with mental health providers; presenting this as an opportunity to learn coping skills to live a valued life while also treating and managing physical symptoms can be a more palatable approach. Patience in this process is key, particularly at the start of the therapeutic relationship, remembering the words of Oscar Wilde that “scepticism is the beginning of faith” (10).

Careful, intentional use of language that promotes mind-body connection should lead away from confusion and uncertainty and form the basis for a truly therapeutic encounter (see Table 2). This involves active listening, and conveying transparency, normalization, validation, and optimism. All these approaches can be used with the entire family, with flexible adaptations for the developmental context.

TRANSPARENCY

A transparent discussion of the role the mind-body connection is playing in the child’s experience is critical. This discussion should use developmentally appropriate, accessible terms (see Table 2 and (9) for examples) and ensure the entire health care team is delivering a consistent message. Somatic symptoms can be described as the body’s expression of emotions which often occurs in sites of the body that are vulnerable (e.g., from prior illness/injury). Openly discussing how emotions impact physical symptoms models for the family that emotions need not be feared or avoided. Describing the child’s condition as having an element of somatization or affected by somatization normalizes the notion that medical conditions have both physical and emotional components. This sets the stage to engage families to pursue all available and appropriate strategies for assessment and treatment, adding mental health providers to their broader healthcare team (11). Analogies can be used to enhance these explanations and make them more accessible (12).

NORMALIZATION, VALIDATION, AND OPTIMISM

While experiencing some level of somatic sensations is a normal and universal phenomenon (13), the challenge for clinicians is to balance normalization (“everyone somatizes”) with a validation of suffering, uncertainty, and confusion (“it makes sense to me that you feel frustrated, because you have heard a lot of mixed messages over the years and have tried so hard to keep going in spite of your symptoms”). Pairing optimism and validation together can communicate hope for the future without dismissing present suffering (“there are treatments that work, you will get better, and I know it can be hard to believe that right now because you’re still in so much pain”). Modeling how to strike this balance in the clinical encounter may also support parents in implementing these communication approaches at home, emphasizing that the benefit often comes from emotions being heard, rather than problems being fixed.

WHAT IS SAID MAY NOT MATTER AS MUCH AS HOW IT IS SAID

Finally, attending deeply to the patient’s emotion perhaps matters even more than clear communication in the initial stage. Providing space for the family to share their story, their interpretations, their hopes, and their hurts, is critical to understanding emotion beneath the surface and co-creating an effective treatment plan. Listening to the family’s culture of expressing and talking about emotions can provide valuable information about the unique needs of each child in their family environment. By attuning to patient narratives about children and families understanding of the developmental origins of the symptoms, clinicians can find “hooks” on which to frame their clinical encounter. While acknowledging that the somatic symptoms are very real and disabling, it is critical to emphasize that they most likely do not represent a yet undiagnosed condition that requires more investigations, framed within a clear explanation of what this conclusion is based on, and a co-developed plan of when this may need to be revisited (e.g., what to do if new symptoms arise) (14). Be open to acknowledging the uncertainty (the “elephant in the room”) that may underlie the diagnosis or even the prognosis and prevent buy-in to any therapeutic plan (7,14). To borrow from the humanistic psychology approach that emphasizes the patient’s free will and self-direction to optimal health, a good outcome is that the family continues to engage in meaningful conversation with care-providers (15). Booking a follow-up appointment communicates the clinician’s commitment that the family will not be abandoned on this new journey forward, ideally at the end of the day so that the conversation does not feel rushed (16). This approach can open mutually respectful exchanges between family and provider that acknowledges the expertise and experience of both in understanding the problem. This biopsychosocial, holistic, and person-centered approach to communication embraces emotions as being central to healthcare. Emotions hold such value and meaning; understanding their role in the physical experience can allow us to embrace them and make a clinical encounter truly therapeutic.

FUNDING

During the initial conceptualization and drafting of this manuscript, Dr. Boerner was affiliated with the Department of Psychiatry, University of British Columbia and BC Children’s Hospital Research Institute, and was supported by a Mental Health Fellowship funded by the BC Children’s Hospital Foundation. She is currently supported by a Postdoctoral Award from the Canadian Child Health Clinician Scientist Program. The other authors received no external funding related to the submitted work.

POTENTIAL CONFLICTS OF INTEREST

All authors: No reported conflicts of interest. All authors have submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. Conflicts that the editors consider relevant to the content of the manuscript have been disclosed.