Tag Archives: chronic illness

Assessing depression in those who are chronically ill

By Cathy L. Pederson, Kathleen Gorman-Ezell and Greta Hochstetler Mayer March 7, 2018

You receive a referral for a new client from a local physician. Great! As you review the materials, it is clear that the physician thinks the client’s issues are “all in her head.” Perhaps she is depressed. A good strengths-based and ecologically grounded counselor is just what she needs.

On the day of the first appointment, you wonder about this 24-year-old woman. You make a quick assessment upon meeting. Diane is pale, thin and has bags under her eyes. She looks exhausted and almost fragile. Yet she is neatly dressed in jeans and a T-shirt, and her light brown hair is pulled into a ponytail. She is not wearing makeup and is naturally pretty. She has an easy smile and is quite pleasant.

As you begin your work with Diane, you realize that a number of her complaints sound like the somatization of depression. She clearly suffers from fatigue. She has also struggled with insomnia the past several months, adding to her exhaustion. Diane reports a decreased appetite and has lost 10 pounds in the past couple of months without effort. Furthermore, she suffers from neuropathic pain in her legs — a chronic pain condition from abnormalities in the sensory nerves that often results in constant pain that may feel like explosions, stings or burning aches. In addition, she frequently has abdominal pain and headaches.

Because of these symptoms, Diane was often absent at work and was subsequently fired. She now relies on her parents for financial support and has moved back home. Diane is clearly depressed … or is she?

Overlapping symptoms

Many people suffering from invisible illnesses such as chronic fatigue syndrome, myalgic encephalomyelitis, Ehlers-Danlos syndrome, fibromyalgia, Lyme disease, mast cell activation disorder, postural orthostatic tachycardia syndrome (POTS) and Sjögren’s syndrome are first diagnosed, often incorrectly, as suffering from depression. Although troubling, this is understandable because the symptoms for these chronic illnesses overlap with somatic complaints associated with depression.

Many people in the general population who are depressed suffer changes in appetite, sleep and weight, and have increased fatigue and pain. Among individuals in the chronic illness community, these are common symptoms related to their physical illness. They may also suffer from other symptoms that make gainful employment or social relationships difficult. These symptoms include brain fog that makes concentration and processing of information challenging, orthostatic intolerance (increased symptoms when standing), exercise intolerance, joint subluxations and dislocations, severe allergic reactions to foods or chemicals, hot flashes, and muscle and joint stiffness or pain.

Many current depression screening instruments have at least a third of their questions related to somatization of depression. This can artificially elevate the depression score in those individuals with a chronic, invisible illness because of the physical symptoms they experience.

For instance, consider the free version of the Beck Depression Inventory. The last seven questions of this popular instrument ask about physical, rather than psychological, changes. Thinking about those with chronic invisible illnesses, imagine their scores for the following somatization of depression items.

  • I can work about as well as before (0). … I can’t do any work at all (3).
  • I can sleep as well as usual (0). … I wake up several hours earlier than I used to and cannot get back to sleep (3).
  • I don’t get more tired than usual (0). … I am too tired to do anything (3).
  • My appetite is no worse than usual (0). … I have no appetite at all anymore (3).
  • I haven’t lost much weight, if any, lately (0). … I have lost more than 15 pounds (3).
  • I am no more worried about my health than usual (0). … I am so worried about my physical problems that I cannot think of anything else (3).
  • I have not noticed any recent change in my interest in sex (0). … I have lost interest in sex completely (3).

There are 21 questions total on the Beck Depression Inventory, each ranging in point value from 0 to 3, with the higher numbers reflecting an increased possibility of depression. For how many of the seven questions above do you think that Diane might report a 2 or a 3 because of her physical ailments? If she chose the most severe response (a score of 3) for each of these seven questions, this would give her 21 points — placing her in the category of moderate depression on the Beck Depression Inventory — without even considering the first 14 questions on the survey.

It is important to realize that some clients who might appear moderately, severely or extremely depressed on a screening instrument such as the Beck Depression Inventory are actually suffering from an undiagnosed physical illness. We urge counselors to explore these somatic symptoms with their clients, particularly if the counselor notices an imbalance in the affective versus somatic parts of the instrument. With an integrated conceptualization of the person within her or his environmental context, counselors can go beyond addressing surface symptomology to explore underlying concerns.

Taking time to build a therapeutic alliance is critical, especially as many in the health care industry feel pressure from insurance companies to conduct quick patient exams. Unfortunately, many health care practitioners don’t get reimbursed for really listening to their patients and probing these multifaceted issues to arrive at a correct diagnosis. As counselors, you have the opportunity to give your clients something that they have been lacking — someone who is willing to take the time to truly listen and piece together the complexity of their problems.

Chronic illness and depression can be comorbid

Just as someone with chronic illness may not have depression, comorbidity of depression with chronic illness is possible and must be ruled out. There is a known link between chronic medical illness and depression for people with heart disease, cancer and a variety of other well-understood medical issues. Approximately 50 percent of people with chronic invisible illnesses also suffer from clinical depression. The trick is to separate those individuals with elevations purely from physical symptoms from those individuals who are truly depressed. There is a paucity of literature to guide clinical practice in this area.

Chronic illness encompasses more than just the physical symptoms. Many clients/patients become socially isolated because they can’t work or go to school. Friends and family members may slowly drift away as the illness drags on for months, years or decades. In the case of invisible illnesses, these clients often look “normal,” so it is not uncommon for people to completely dismiss their affliction. Many of these disorders are not well-understood, and a stigma can be attached to them that adds shame and guilt for being ill.

Poor treatment from health care workers can compound the problem. Many people with these illnesses have perfectly normal blood and urine tests, electrocardiograms and MRIs. If the tests are normal, then the symptoms must be “all in the person’s head,” right? Can people truly be suffering when traditional testing can’t find the cause? Many individuals working in the health care professions would say no. As a result, many of these patients are labeled as being high maintenance, and their own physicians may not believe that they are truly ill. Even for those individuals with a chronic or invisible illness who are not depressed, counseling can be important to increase their hope, improve their quality of life, help them gain perspective and help them work through social issues as they learn to deal with their new reality.

Properly diagnosing clinical depression for people with chronic illnesses is important, just as it is in the general population. Interestingly, not all people in the chronic illness community who die by suicide are clinically depressed. Research has shown that individuals with chronic invisible illnesses, particularly women, are at an increased risk for suicide. Some studies have reported that nearly 50 percent of people with POTS or fibromyalgia report suicidal ideation. Among those with chronic fatigue syndrome and myalgic encephalomyelitis, approximately 20 percent are at high risk for suicide. These are staggering numbers.

Although most counselors routinely assess for suicide, it is important to know that individuals with chronic invisible illnesses often do not present with the same symptomatology. Whereas most people in the general population who are suicidal tend to have comorbid depression, people with chronic invisible illnesses may not present this way.

Suicide risk factors for individuals with chronic invisible illness include loneliness, perceived burdensomeness and thwarted belongingness. The acquired capability for lethal self-injury is a critical area of risk to explore for those with chronic invisible illness due to repeated exposure to painful or fearsome experiences. These risk factors should be routinely assessed and worked into the treatment plan to target the underlying suicidality and reasons for living. Determining specific goals and objectives on the treatment plan, as well as providing regular check-ins on these topics, may help to decrease the risk of suicide.

The individual’s support system, including the treating physician, should also be made aware of the link between these risk factors and suicide. By facilitating this conversation between clients who are chronically ill and their support systems, some of the concerns related to loneliness, perceived burdensomeness and thwarted belongingness may be addressed proactively and conversely serve as protective factors rather than risk factors.

Counseling clients who are chronically ill

Many individuals with chronic illnesses need a safe place to vent their frustrations while receiving validation for their emotional, social and physical suffering, even if they are not clinically depressed. You may be the only person who believes them as they explain their symptoms and how the chronic illness impacts their daily life.

The therapeutic relationship and the ability to establish rapport are imperative to initiating change in the treatment process. Individuals with chronic invisible illnesses may benefit from individual therapy, couples or family-based interventions, multidisciplinary case coordination and group therapy with other people who are chronically ill. Integrating teletherapy or online therapy can ensure that these individuals, particularly those who are partially or completely homebound, have access to the care that they need.

Some people with chronic invisible illnesses struggle to get through the day. Because of their physical struggles, they often miss activities that they enjoy and may feel disconnected from their social circles. Feelings of loneliness and isolation may develop. As their illness progresses, individuals may require more assistance to perform tasks of daily living (e.g., showering, cooking, cleaning, shopping), which can lead to feelings of burdensomeness. As counselors, it is important to help these individuals find strong support networks and to provide psychoeducational information to the significant people in their lives. It is also crucial to assure these clients that they are resilient and have inherent value that is untouched by their illness.

Many individuals with chronic invisible illness are accurately diagnosed later in life. This fact illustrates how the course of chronic illness can impact the developmental process and quality of life at different stages. The diagnosis and ensuing disability can alter many of these individuals’ plans for the future, including college, career, family life and, at times, independence. This may cause them to redefine themselves within the scope of their chronic illness. Often, they must develop new roles in school, at work and within their families and friendships as they live within the confines of their health issues. As a result, their self-esteem and identity may be negatively impacted and must be addressed within the therapeutic context at different points in time.

This may be done by challenging negative self-talk, focusing on intrinsic motivation and using techniques such as radical acceptance, acceptance and commitment therapy, mindfulness-based stress reduction and a strengths-based, ecological perspective. By focusing on these individuals’ strengths, counselors may empower them to create new roles that will provide joy while also embracing the changes in their physical abilities.

In addition to the physiological changes that they are experiencing, clients who are chronically ill may simultaneously be going through the grief process. It is important for counselors to work with these clients to acknowledge the reality of the loss of their physicality, address feelings associated with their loss and help them to adjust to a new “normal.” Magical thinking often accompanies the process of grief and loss and occurs when an individual creates an improbable theory or belief system (often self-deprecating) around why a loss might have occurred. This often serves as an initial defense mechanism but can become detrimental over time. As a result, it is important for counselors to work with chronically ill patients to challenge any magical thinking that may be in place.

Finding normalcy after loss takes time. It is important to remind those with chronic invisible illnesses that there will be good days and bad days, while simultaneously working with them to instill hope for the future. Counselors can play a valuable role in helping people with chronic invisible illnesses to accept their physical limitations, while also empowering them to live rewarding and fulfilling lives.

 

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Cathy L. Pederson holds a doctorate in physiology and neurobiology. She is a professor of biology at Wittenberg University and is the founder of Standing Up to POTS (standinguptopots.org). Contact her at cpederson@wittenberg.edu.

Kathleen Gorman-Ezell holds a doctorate in social work. She is a licensed social worker and an assistant professor of social work at Ohio Dominican University. Contact her at gorma111wnek@ohiodominican.edu.

Greta Hochstetler Mayer holds a doctorate in counselor education and is a licensed professional counselor. She is CEO and initiated suicide prevention coalitions for the Mental Health & Recovery Board of Clark, Greene and Madison Counties in Ohio. Contact her at greta@mhrb.org.

 

Letters to the editor: ct@counseling.org

Counseling Today reviews unsolicited articles written by American Counseling Association members. To access writing guidelines and tips for having an article accepted for publication, go to ct.counseling.org/feedback.

 

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Related reading, from the Counseling Today archives: “The tangible effects of invisible illness” by Cathy L. Pederson and Greta Hochstetler Mayer

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

Talking through the pain

By Laurie Meyers January 30, 2018

By the time the 43-year-old man, a victim of an industrial accident, limped into American Counseling Association member David Engstrom’s office, he’d been experiencing lower back pain for 10 years and taking OxyContin for six. The client, whose pain was written in the grimace on his face as he sat down, was a referral from a local orthopedic surgeon, who was concerned about the man’s rapidly increasing tolerance to the drug.

“He often took twice the prescribed dose, and the effect on his pain was diminishing,” says Engstrom, a health psychologist who works in integrated care centers.

The man’s story is, unfortunately, not unusual. According to the National Institutes of Health, 8 out of 10 adults will experience lower back pain at some point in their lives. As the more than 76 million baby boomers continue to age, many of them will increasingly face the aches and pains that come with chronic health issues. And as professional counselors are aware, mental health issues such as depression, anxiety and addiction can also cause or heighten physical pain.

Those who suffer from chronic pain are often in desperate need of some succor, but in many cases, prescription drug treatments or surgery may be ineffective or undesirable. Fortunately, professional counselors can often help provide some relief.

Treating chronic pain

At first, the client had only one question for Engstrom: “I’m not crazy, so why am I here?”

Although the man’s physician did not think that the pain was all in the man’s head, it is not uncommon for sufferers of chronic pain to encounter skepticism about what they are experiencing. “It was important … to defuse the idea that I might think he was imagining his pain,” Engstrom says. “So I [told him] that I accepted that his pain was real and that all pain is experienced from both body and mind. I told him that we would be a team and work on this together.”

Engstrom and the client worked together for five months. As they followed the treatment plan, the man’s physician slowly eased him off of the OxyContin.

Engstrom began by teaching the client relaxation exercises such as progressive muscle relaxation. “When in pain, the natural inclination of the body is to contract muscles,” Engstrom explains. “In the long term, this reduces blood flow to the painful area and slows the healing process. Contracted muscles can be a direct source of pain.”

Engstrom also began using biofeedback to promote further relaxation. In biofeedback sessions, sensors are attached to the body and connected to a monitoring device that measures bodily functions such as breathing, perspiration, skin temperature, blood pressure, muscle tension and heartbeat.

“When you relax, clear your mind and breathe deeply, your breathing slows and your heart rate dips correspondingly,” Engstrom explains. “As the signals change on the monitors, you begin to learn how to consciously control body functions that are normally unconscious. For many clients, this sense of control can be a powerful, liberating experience.”

As Engstrom’s client learned to control his responses, he began reporting a decrease in pain following the relaxation exercises.

Engstrom also used cognitive behavior therapy (CBT) methods, including asking the man to keep a daily journal recording his pain level at different times of the day, along with his activity and mood. Through the journal, the man started recognizing that his pain level wasn’t constant. Instead, it varied and was influenced by what he was doing and thinking at the time.

Engstrom highly recommends CBT for pain treatment because it helps provide pain relief in several ways. “First, it changes the way people view their pain,” he says. “CBT can change the thoughts, emotions and behaviors related to pain, improve coping strategies and put the discomfort in a better context. You recognize that the pain interferes less with your quality of life and, therefore, you can function better.”

In this case, the client was trapped by thoughts that “the pain will never go away” and “I’ll end up a cripple,” Engstrom says. He and the client worked on CBT exercises for several months, keeping track of and questioning the validity of such negative future thoughts. They also practiced substituting more helpful thoughts, including “I will take each day as it comes” and “I will focus on doing the best I can today.”

Chronic pain often engenders a sense of helplessness among those who experience it, Engstrom says, so CBT also helps by producing a problem-solving mindset. When clients take action, they typically feel more in control of their pain, he says.

CBT also fosters new coping skills, giving clients tools that they can use in other parts of their lives. “The tactics a client learns for pain control can help with other problems they may encounter in the future, such as depression, anxiety or stress,” Engstrom says.

Because clients can engage in CBT exercises on their own, it also fosters a sense of autonomy. Engstrom often gives clients worksheets or book chapters to review at home, allowing them to practice controlling their pain independently.

Engstrom notes that CBT can also change the physical response in the brain that makes pain worse. “Pain causes stress, and stress affects pain-control chemicals in the brain, such as norepinephrine and serotonin,” he explains. “By reducing arousal that impacts these chemicals, the body’s natural pain-relief responses may become more powerful.”

Although Engstrom acknowledges that he could not completely banish the discomfort his client felt, he was able to lessen both the sensation and perception of the man’s pain and give him tools to better manage it.

Taking away pain’s power

Mindfulness is another powerful tool for lessening the perception of pain, says licensed professional counselor (LPC) Russ Curtis, co-leader of ACA’s Interest Network for Integrated Care.

Mindfulness teaches the art of awareness without judgment, meaning that we are aware of our thoughts and feelings but can choose the ones we focus on, Curtis continues. He gives an example of how a client might learn to regard pain: “This is pain. Pain is a sensation. And sensations tend to ebb and flow and may eventually subside, even if just for a little while. I’ll breathe and get back to doing what is meaningful to me.”

Engstrom agrees. Unlike traditional painkillers, mindfulness is not intended to dull or eliminate the pain. Instead, when managing pain through the use of mindfulness-based practices, the goal is to change clients’ perception of the pain so that they suffer less, he explains.

“Suffering is not always related to pain,” Engstrom continues. “A big unsolved puzzle is how some clients can tolerate a great deal of pain without suffering, while others suffer with relatively smaller degrees of pain.”

According to Engstrom, the way that people experience pain is related not just to its intensity but also to other variables. Some of these variable include:

  • Emotional state: “I am angry that I am feeling this way.”
  • Beliefs about pain: “This pain means there’s something seriously wrong with me.”
  • Expectations: “These painkillers aren’t going to work.”
  • Environment: “I don’t have anyone to talk to about how I feel.”

By helping people separate the physical sensation of pain from its other less tangible factors, mindfulness can reduce the suffering associated with pain, even if it is not possible to lessen its severity, Engstrom says.

According to Engstrom, mindfulness may also improve the psychological experience of pain by:

  • Decreasing repetitive thinking and reactivity
  • Increasing a sense of acceptance of unpleasant sensations
  • Improving emotional flexibility
  • Reducing rumination and avoidant behaviors
  • Increasing a sense of acceptance of the present moment
  • Increasing the relaxation response and decreasing stress

Curtis, an associate professor of counseling at Western Carolina University in North Carolina, suggests acceptance and commitment therapy (ACT) as another technique to help guide clients’ focus away from their pain.

“ACT can help people revisit what their true values are, whether it’s being of service, having a great family life or creating art,” he notes. Encouraging clients to identify and pursue what is most important to them helps ensure that despite the pain they feel, they are still engaging in the things that give their lives meaning and not waiting for a cure before moving forward, Curtis explains.

Teamwork and support

In helping clients confront chronic pain, Curtis says, counselors should not forget their most effective weapon — the therapeutic relationship. Because living with chronic pain can be very isolating, simply sitting with clients and listening to their stories with empathy is very powerful, he says.

Counselors have the opportunity to provide the validation and support that clients with chronic pain may not be getting from the other people in their lives, says Christopher Yadron, an LPC and former private practitioner who specialized in pain management and substance abuse treatment. The sense of shame that often accompanies the experience of chronic pain can add to clients’ isolation, he says. According to Yadron, who is currently an administrator at the Betty Ford Center in Rancho Mirage, California, clients with chronic pain often fear that others will question the legitimacy of their pain — for instance, whether it is truly “bad enough” for them to need extended time off from work or to miss social occasions.

Curtis says it is important for counselors to ensure that these clients understand that the therapeutic relationship is collaborative and equal. That means that rather than simply throwing out solutions, counselors need to truly listen to these clients. This includes asking them what other methods of pain relief they have tried — such as supplements, over-the-counter painkillers, physical therapy, yoga or swimming — and what worked best for them, Curtis says.

The U.S. health care system has led many people to believe that there is a pill or surgery for every ailment, Curtis observes. This makes the provision of psychoeducation essential for clients with chronic pain. “Let them know there’s no magic bullet,” he says. Instead, he advises that counselors help clients see that relief will be incremental and that it will be delivered via multiple techniques, usually in conjunction with a team of other health professionals such as physicians and physical therapists.

Curtis, Yadron and Engstrom all agree that counselors should work in conjunction with clients’ other health care providers when trying to address the issue of chronic pain. Ultimately, however, it may be up to the counselor to put the “whole picture” together.

A 60-something female client with severe depression was referred to Engstrom from a pain clinic, where she had been diagnosed and treated for fibromyalgia. After an assessment, Engstrom could see that the woman’s depression was related to continuing pain, combined with social isolation and poor sleep patterns. The woman was unemployed, lived alone and spent most of her day worrying about whether her pain would get any better. Some of her previous doctors had not believed that fibromyalgia was a real medical concern and thus simply had dismissed her as being lonely and depressed. Despite finally receiving treatment for her fibromyalgia, the woman was still in a lot of pain when she was referred to Engstrom.

Engstrom treated the woman’s depression with CBT and taught her to practice mindfulness through breathing exercises and being present. Addressing her mood and sleep problems played a crucial role in improving her pain (insomnia is common in fibromyalgia). By dismissing the woman’s fibromyalgia diagnosis, discounting the importance of mood and not even considering the quality of her sleep, multiple doctors had failed to treat her pain.

Engstrom points out that in this case and the case of his client with lower back pain, successful treatment hinged on cognitive and behavioral factors — manifestations of pain that medical professionals often overlook.

 

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Laurie Meyers is the senior writer for Counseling Today. Contact her at lmeyers@counseling.org.

Letters to the editor: ct@counseling.org

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

 

When brain meets body

By Laurie Meyers February 22, 2017

Chinese medicine has always acknowledged the link between the body and the mind. In Western medicine, from the time of the ancient Greeks through the Elizabethan era, the thinking was that four bodily humors (black bile, yellow bile, phlegm and blood) influenced mood, physical health and even personality. Shakespeare built some of his characters around the characteristics of the humors (such as anger or depression). It sounds faintly ridiculous, but the idea that good health came from a balance of the humors — in essence, that the physical and the mental were closely related — was not so far off the mark. Then along came René Descartes and dualism — the school of thought that says that mind and body are separate and never the twain shall meet, essentially.

In the past few decades, however, Western medicine has once again begun to acknowledge that the body and mind don’t just coexist, they intermingle and affect each other in ways that researchers are only beginning to understand.

Counselors, of course, are well-aware of the mind and body connection, but it is becoming increasingly evident that a person’s thoughts can directly cause changes in physiological processes such as the regulation of cortisol. This cause-and-effect relationship suggests that in some cases, symptoms typically considered psychosomatic in the past might actually be indicators of physical changes that are having or will have an effect on the client’s physical health.

Take, for instance, something that most people have experienced at some point in their lives: a “nervous” stomach. It turns out that having a “gut feeling” and “going with your gut” are not just metaphors. Researchers have begun to refer to the stomach as the “second brain” and the “little brain.”

Although no one is going to be making reasoned decisions or solving algebra equations with the little brain anytime soon, the enteric nervous system (ENS) does possess some significant brainlike qualities. It contains 100 million neurons and numerous types of neurotransmitters, including serotonin and dopamine. In fact, researchers have found that most of the body’s serotonin (anywhere from 90 to 95 percent) and approximately half of its dopamine are found in the stomach. The main role of the ENS is to control digestion, but it can also send messages to the brain that may affect mood and behavior.

Researchers are still teasing out whether (and how) the gut-brain conversation causes emotion to affect the gastrointestinal system and vice versa, but a major area of focus is the microbiome — the vast community of bacteria that dwell primarily within the gut. So far, research suggests that these bacteria affect many things in the body, including mood. Gut bacteria may directly alter our behavior; they definitely affect levels of serotonin. (For more discussion of the microbiome and its possible influence on mental health, read the Neurocounseling: Bridging Brain and Behavior column on page 16 of the March print issue of Counseling Today.)

The bacteria in the gastrointestinal system may also play a role in depression and anxiety. Digestive issues such as irritable bowel syndrome and functional issues such as diarrhea, bloating and constipation are associated with stress and depression. Some researchers believe a causal connection may exist that is bidirectional — meaning it is not always the psychological that causes the gastrointestinal problems but perhaps vice versa. Interestingly, research has shown that approximately 75 percent of people who have autism have some kind of gastro abnormality such as digestive issues, food allergies or gluten sensitivity.

Most people have heard the injunction to “think with your heart, not your head.” And in Western culture, the notion of heartbreak is commonly understood not just as an emotional metaphor but as an actual sensation of physical pain. Once again, these aphorisms and metaphors represent an instinctive understanding of another significant connection: that between emotion and the heart.

Coronary artery disease (CAD) is linked to emotion and mental health — depression in particular. Research indicates that 25 to 50 percent of people with CAD have symptoms of depression. Some experts believe not only that depression can cause CAD, but that CAD may cause depression. Increased activity in the amygdala is associated with arterial inflammation, and inflammation is a factor in CAD.

Research indicates that inflammation in the body plays some kind of role in many chronic diseases, including asthma, autoimmune disorders, chronic obstructive pulmonary disease, obesity and type 2 diabetes. Some researchers believe that inflammation may also be a causative factor in mental illness.

Letting go

If physical and mental health are so tightly bound, what role do counselors play in balancing the two? A vital role, believes licensed professional counselor (LPC) Russ Curtis, co-leader of the American Counseling Association’s Interest Network for Integrated Care.

Yes, counselors can help clients manage chronic health conditions and cope with stress and mental illness, Curtis says, but it’s the client-counselor relationship — the therapeutic bond — that he views as the most important element. He believes the simple act of listening, taking clients’ concerns seriously and becoming their ally can help jump-start their healing process. “Once you sit down and build a rapport with clients and treat them with respect and dignity, you are helping them heal,” says Curtis, an associate professor of counseling at Western Carolina University in North Carolina.

Curtis, who has a background in integrated care, doesn’t equate “helping” with “curing.” But he does believe that inflammation in the body strongly affects mental and physical health, and he says that counselors possess the tools to help clients ameliorate the factors that may contribute to inflammation.

For example, gratitude and forgiveness, and particularly letting go of anger, are essential to emotional wellness, and in some studies, Curtis says, they have been shown to have a physical effect. In one study, participants were instructed to jump as high as possible. Those who thought of someone they had consciously forgiven despite being wronged by them in the past were able to jump higher than participants who received no such instruction, he says. Another study found that cultivating forgiveness by performing a lovingkindness meditation produced a positive effect on participants’ parasympathetic systems.

Curtis, who also researches positive psychology, asks clients in his small part-time private practice to keep gratitude journals, which is something that he also does personally. In addition, he uses motivational interviewing techniques to help clients develop forgiveness.

If a client isn’t ready to forgive, the counselor might explore the ways in which anger may be affecting the person’s emotional and physical health and functioning in daily life, Curtis says. If the client is still resistant to the thought of issuing forgiveness, then the counselor can broach the idea of the client at least letting go of his or her anger, he adds.

Anger is particularly toxic to personal well-being, stresses Ed Neukrug, an LPC and licensed psychologist who recently retired from private practice, where he focused in part on men’s health issues. “Anger is a difficult topic for many clients to understand and address appropriately,” he says. “Usually, individuals who have angry outbursts have not learned to monitor their emotions appropriately. They most likely have had models who had similar outbursts. These individuals need to obtain a better balance between their emotional states and their thinking states.”

“Oftentimes, just teaching clients about mindfulness can be helpful because it begins to have them focus on what they are feeling,” continues Neukrug, a member of ACA and a professor of counseling and human services at Old Dominion University in Virginia. “Once they begin to realize that they have angry feelings, they can then talk to the person who they are angry at in appropriate ways, to reduce the anger and resolve the conflict early on. If they wait too long, they are likely to have an outburst.”

Anger, like stress, can cause physical changes in the body, such as a surge in adrenalin, cortisol and other stress hormones; raised blood pressure; and increased heart rate and muscle tension. Over time, as the body is constantly put into this “fight or flight” mode, the immune system may treat chronic stress or anger almost like a disease, triggering inflammation.

To help ameliorate the effects of toxic emotions, Neukrug recommends that counselors teach clients how to sit and engage in quiet contemplation. He notes that many people don’t realize that they are involved in a constant, almost unconscious, running mental commentary throughout the day. By taking time for self-reflection, clients can become better aware of how they are reacting to these thoughts, both emotionally and physically, and can then engage in stress reduction techniques such as progressive relaxation and mindfulness exercises.

Neukrug also recommends what he calls “life-enhancing changes” such as exercising, eating healthfully, journaling, confronting and resolving personal conflicts, and getting enough sleep. He also is a big proponent of nurturing personal relationships, taking regular breaks from work and going away on vacations to lessen the effects of stress.

Healthy habits

David Engstrom, an ACA member and health psychologist who works in integrative health centers, teaches his clients mindfulness exercises and recommends that they engage in daily gratitude journaling. But he also emphasizes a factor that is often overlooked despite its unquestioned importance to physical and mental well-being: sleep.

“It’s the first thing I focus on [with new clients],” he says. “There are few people who can be real short sleepers,” meaning less than six hours per night. “Most of us if we are [regularly getting] under seven hours a night have a higher risk of diabetes, obesity, heart disease, hypertension, chronic cardiovascular problems, depression and anxiety.”

Engstrom has his clients keep a sleep log detailing information such as the number of hours of sleep they get each night, when they went to sleep, how often they woke up in the night and the overall quality of their sleep. He also has them track their alcohol intake and physical exercise. He notes that exercise can vastly improve sleep quality, whereas drinking any alcohol after about 5 p.m. hinders sleep.

For clients who are having trouble falling asleep, Engstrom recommends mindfulness techniques such as being still and present in the bedroom and practicing deep breathing. He also sometimes gives clients MP3 files and CDs that contain guided mindfulness activities.

Counselors also can also play a role in changing clients’ health behavior for the better through psychoeducation, Curtis says. He recommends the use of simple cards that list information such as the benefits of smoking cessation or strategies for preventing or controlling diabetes. Curtis believes that clients are best served physically and mentally by integrated health care, a model in which a person’s physical and mental health needs can be attended to in one location by multiple professionals from different disciplines, such as LPCs and primary care physicians. He currently serves on two integrated care advisory boards for local mental health centers and also supervises students serving internships in integrated care settings.

When he practiced in integrated care, Curtis says a significant percentage of the clients he saw had not just mental health issues but also serious physical issues such as diabetes or cancer. “I was part of providing real support,” he says. “Instead of just having a 20-minute session with the doctor and being told what to do, clients were able to sit with me and process their fears and what they were feeling. I was also making sure that they understood what to take, where to go for bloodwork and making sure they didn’t feel lost [in the process].”

Neukrug uses a structured interview intake process in which he asks clients about their medical histories, any past or current issues with substance abuse and any experiences of major trauma. He has found that many clients are more likely to reveal issues such as a history of trauma or concerns about their physical health in written form rather than verbally. He notes that men in particular can be hesitant to raise common health-related issues with which they are struggling, such as erectile dysfunction, sexually transmitted diseases and prostatitis.

“Men [are] fragile about their egos,” he says. “If they have a disease that affects how they view their manliness or impairs them, they may just not want to talk about it. But any of these diseases can impact their relationships, their ability to earn an income, which is related to male identity and being the provider, so counselors just need to have that attitude that they are open to hearing about anything.”

Trauma’s toll on the body

Examining the health of adults who have experienced childhood abuse and neglect paints a particularly vivid portrait of the connection between physical and mental health. A large body of research — most of it using information gathered from the joint Centers for Disease Control and Prevention-Kaiser Permanente study “Adverse Childhood Experiences” (ACE) — has demonstrated that early exposure to violence and trauma can lead to significant illness later in life.

The initial study was conducted in 1995-1997 and surveyed 17,000 patients at Kaiser’s Health Appraisal Clinic in San Diego. Participants answered detailed questions about childhood history of abuse (emotional, physical or sexual), neglect (emotional or physical) and family dysfunction (for example, a parent being treated violently, the presence of household substance abuse, mental illness in the household, parental separation or divorce, or a member of the household who was engaged in or had engaged in criminal behavior). Respondents who reported one or more experiences in any of the “adverse” categories were found to be more likely to develop chronic conditions and diseases such as heart disease, obesity, cancer, chronic obstructive pulmonary disease, liver disease, depression, anxiety and other mental illnesses. The risk of developing these health problems also increased in correlation with the number of adverse incidents the study participants reported experiencing.

Although some of the health problems developed by adult survivors of trauma can be traced directly to injury or neglect, in many cases, specific cause and effect cannot be established. Nevertheless, the correlation between trauma and illness is significant, and some research findings — such as an increased incidence of autoimmune diseases among adult survivors of child abuse and neglect — suggest that the connection can be systemic and affect the entire body.

Causation versus correlation aside, clients who have experienced long-term trauma are often living with both mental and physical complaints, and the number of prospective clients who have a background of adverse childhood events may surprise some clinicians, say trauma experts. More than half of the ACE respondents reported experience with one adverse category, and one-fourth of participants had been exposed to two or more categories of adverse experiences.

Given the prevalence of traumatic exposure, ACA member Cynthia Miller, an LPC who has a private practice in Charlottesville, Virginia, believes it is important to ask about early childhood experiences as part of her intake process, and she urges other clinicians to do the same. She has clients fill out a written scale based on the questionnaire used in the ACE study. If clients indicate a history of abuse or neglect, Miller uses it as a way to explore how trauma has affected their lives.

“I think counselors need to know that trauma can affect the body in unexpected ways — ways in which the client may not even be aware,” Miller says. “I ask what impact they think these experiences had on their lives and then segue to asking, ‘What effect do you think this has had on your health?’”

Miller focuses on self-care practices for clients. For instance, clients might be using food to self-soothe, which can lead to obesity, diabetes and a whole host of other problems. Miller helps them to examine how the behavior is related to what they have been through and to identify what they are trying to soothe.

Miller also teaches her clients to tune in to their bodies. That can be extremely difficult because trauma survivors often use a kind of dissociation or “tuning out” as a survival mechanism, she explains. Clients who have been through physical trauma often exist, in essence, from the chin up, totally separating themselves from what is happening with their bodies, Miller says.

“Where in your body do you feel that anger?” Miller asks in trying to help them reestablish that whole-body connection. “Where do you feel the stress?”

According to Miller, yoga and mindfulness, particularly progressive muscle relaxation and diaphragmatic breathing, can be very useful for helping clients learn how to self-soothe and pay attention to how their bodies are responding to what they are doing.

On a more basic level, counselors can also play an essential role in ensuring that their clients get proper health care. “A lot of times I’ve found trauma patients don’t even go to the doctor,” Miller says. “Sometimes they may have issues with getting help, such as thinking there’s nothing they can do [to help the situation], and it all feels too hard. One of the questions I routinely ask is, ‘How long has it been since you had a good physical?’ If they say a year or more, I ask, ‘Would you go have one now? If not, why? What are your concerns? How can I help?’”

Miller says counselors can play an essential role in educating clients about the effects of trauma on the body and how that can cause chronic inflammation. Counselors can encourage clients to seek any needed medical care and also talk to them about what they can do personally to help counteract their bodies’ inflammatory responses, she says.

A partner in health

Another area where counselors can help clients with their physical health is by talking with them about why it is important to take medication, Miller says. She notes that in the general population, only about 50 percent of people who are prescribed medications for chronic conditions take them regularly. Counselors can uncover the legitimate concerns that get in the way of treatment compliance, Miller continues, such as the complexity of the regimen, whether the client has adequate access to obtain needed medication or treatment, and whether the client has easy access to the basics such as food, shelter and water.

It is also important for counselors to explore clients’ in-depth thoughts and feelings related to treatment, Miller says. For example, do they even believe in taking medication, or do they simply dislike taking pills?

Once counselors uncover the reasons that a client might not be adhering to medical regimens or engaging in healthy behavior, they should also consider whether the client is even ready to make a change, says Miller, adding that she finds motivational interviewing helpful in this regard.

Counselors can also help clients break down the change into small steps. For instance, Miller says, “When you talk about exercise, people think you are automatically talking about 60 minutes on the treadmill or kickboxing. [But] what is reasonable? If a person is very depressed, maybe you start [the process] in session. If it’s a decent day outside, can you do the session outside and maybe take a walk?”

Clients also need to be made aware that change is often slow, Miller says. If they did five minutes of exercise this week and didn’t exercise the week before, that five minutes is worth celebrating, she says.

Miller also works with clients on sleep hygiene, including tracking how much caffeine they ingest, how late in the day they stop consuming caffeine and the amount of sugar they eat. “Are they setting a sleep time?” asks Miller. “Are they being exposed to blue light? Is there a TV in the bedroom?”

She also helps clients develop a pre-bedtime routine and, if they have trouble going to sleep, encourages them to get up and do something boring until they feel sleepy again.

“If they are still having disrupted sleep and nightmares [even with sleep hygiene], I refer to a physician,” Miller says. “I’m not against someone taking a sleep medication if all other routes have failed because not getting sleep becomes a self-perpetuating cycle.”

Miller, like the other experts interviewed for this story, is an advocate for integrated care because it provides a more complete picture of — and a stronger connection between — clients’ physical and mental health. “If we have counselors who are embedded in primary care, we get a better picture of the client,” she says. “If we are separate, we’re not necessarily going to hear about how long they’ve been struggling with obesity or keeping their blood sugar down. We might not know that they’ve told the doctor that they’re struggling to take medicine regularly.”

 

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Additional resources

To learn more about the topics discussed in this article, take advantage of the following select resources offered by the American Counseling Association.

Counseling Today (ct.counseling.org)

Practice briefs (counseling.org/knowledge-center/practice-briefs)

  • “Wellness” by Dodie Limberg and Jonathan Ohrt
  • “Complex Trauma and Associated Diagnoses” by Greg Brack and Catherine J. Brack

Books and DVDs (counseling.org/publications/bookstore)

  • Relationships in Counseling and the Counselor’s Life by Jeffrey A. Kottler and Richard S. Balkin
  • A Counselor’s Guide to Working With Men edited by Matt Englar-Carlson, Marcheta P. Evans and Thelma Duffey
  • Stress Management: Understanding and Treatment (DVD) presented by Edna Brinkley

Podcast (counseling.org/knowledge-center/podcasts)

  • “The Brain, Connectivity and Sequencing” with Jaclyn M. Gisburne and Jana C. Harr

 

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Laurie Meyers is the senior writer for Counseling Today. Contact her at lmeyers@counseling.org.

Letters to the editor: ct@counseling.org

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

Treating psychogenic nonepileptic seizures

By Jason Wright August 26, 2016

Imagine what it’s like to suffer from seizures that can strike anytime, anywhere. Imagine losing your driver’s license, job and social life because of seizures that seem to be uncontrollable. Imagine the emotional turmoil that ensues as these seizures take over more and more of what you once enjoyed, considered necessary or maybe even took for granted.

Now imagine your neurologist or epileptologist telling you there is no medical reason for your condition. The seizures have a psychological origin and are your brain’s way of coping with Branding-Images_seizuresemotional stress. Unlike what your primary care physician told you, your condition isn’t epilepsy, meaning all those drugs you’re taking to treat epilepsy are absolutely worthless.

Finally, imagine dealing with the skepticism of your family and friends now that they know these seizures are “all in your head — the doctor even said so.” This is a snapshot of what it is like for people who suffer from psychogenic nonepileptic seizures (PNES).

My first case

It was a Tuesday afternoon at my clinic, one of the week’s two “walk-in” days in which both regular and new clients could see a clinician without an appointment. On this particular day, a young woman in her 20s (I’ll call her Charleen) walked in, trembling and barely able to speak. All our clinicians were busy, but the receptionist told her that if she had a seat, someone would be with her shortly. The front office staff said she seemed slightly disoriented and not fully able to explain why she was in our office or who had referred her.

After I finished another client’s session, I walked into the waiting room and introduced myself. Charleen made no eye contact, and about a minute into our conversation, she told me she had to leave and return home to “take her dogs out.” She assured me that she would be back, however. Later that day, she called the office and made an appointment with me for the following week.

During that appointment, Charleen told me she had been suffering from PNES and anxiety, and that a local mental health agency had referred her for those conditions. She had left so abruptly the day she walked in because she was on the verge of having a seizure episode and didn’t want to have it in my office. She then tearfully proceeded to tell me about her life, and losses, with PNES, which included the experiences mentioned at the beginning of this article.

Although I was aware of PNES, I had never worked with anyone diagnosed with the condition. With more than 20 years of experience as a licensed counselor, however, I had extensive experience with clients struggling with anxiety. There were no other places that worked with PNES within a reasonable distance for Charleen, so I agreed to become her counselor. I began reading everything I could get my hands on related to PNES, starting with Psychogenic Non-epileptic Seizures: A Guide, by Lorna Myers, and even attended an online training given by Myers.

My work with Charleen progressed nicely, and I began to contact other referral sources in my area for more PNES cases. The treatments I used were bringing impressive results to a condition that, as I found out later, many clinicians feared. As the successes continued, I contacted Myers, director of the PNES Treatment Program and the Clinical Neuropsychology Program at the Northeast Regional Epilepsy Group in New York, to be placed on the national referral registry for PNES. Given the dearth of providers for PNES, I began getting referrals from other states. My zeal for working with PNES sufferers has continued to grow since that time.

Diagnosis

Although the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) does not include the acronym PNES, it does describe the condition as a conversion disorder (functional neurological symptom disorder) “with attacks or seizures” (F44.5). Professionals treating the condition most often use the acronym PNES, but NEAD (nonepileptic attack disorder) is also used on occasion.

The DSM-5 diagnostic criteria for psychogenic seizures include “altered voluntary motor or sensory function” that do not have a medical or neurological origin and are “not better explained by another medical or mental disorder” and that cause “clinically significant distress” in all facets of life. The term pseudo-seizures is often used to describe this condition. This is inaccurate, however, because there is nothing fake (or pseudo) about these seizures. PNES is not the same as malingering (looking for secondary gain) or factitious disorder (an attraction to being ill). Individuals who experience PNES subjectively believe and feel that they do not have control over their condition.

Several tests can help rule out seizures with a medical origin. The gold standard for diagnosing PNES, however, is the video EEG, a test that measures brain waves. During a video EEG, the person is admitted to an inpatient facility and observed for an extended period of time (generally multiple days). Whenever a seizure occurs, the brain’s electrical activity is analyzed. When a seizure has a medical origin, the EEG will display abnormal brain wave activity. In the case of PNES, brain wave activity remains unchanged during the seizure. Currently, this is the only way to reliably diagnose PNES.

In some cases, individuals who suffer from psychogenic seizures may also have epilepsy or experience other medically oriented seizures. In their paper “Defining psychogenic non-epileptic seizures,” Selim Benbadis and Valerie Kelley write that “about 10 percent of patients with PNES also have epilepsy.”

Traumatic experiences and treatment options

In most cases, sufferers of psychogenic seizures have endured at least one significant traumatic experience in their past, often including sexual victimization. Whatever the traumatic experience may be, psychogenic seizures are believed to serve as a psychological shut-off valve of sorts when sufferers become emotionally distressed. The stress may be due to external circumstances (e.g., social anxiety, job stress) or internal stimuli (e.g., flashbacks from traumatic experiences, hallucinations). It is common for PNES to occur comorbidly with other psychiatric conditions such as posttraumatic stress disorder (PTSD), dissociative disorders and anxiety disorders.

What can counselors do to help those suffering from psychogenic seizures? There are several treatment options to consider.

Psychoeducation: Psychoeducation is extremely important for those suffering from PNES because many of the clients who seek counseling do so only after years of unsuccessful treatment for epilepsy or other medically oriented conditions. They are typically referred to counseling after finally being successfully diagnosed by an epileptologist or neurologist but still may not have a proper understanding of how something that seems to have a medical origin is actually psychological in nature. Proper education for clients and their loved ones will help minimize the confusion and stigma that are often associated with this condition.

Journaling and mindful awareness: This phase of treatment involves clients learning two vital exercises: keeping a seizure journal and mindful awareness.

Before individuals become incapacitated by psychogenic seizures, they generally report a variety of prodromal symptoms, including trembling, headaches, dizziness and fatigue. The typical response one feels when a seizure is approaching is to become more anxious. This response is logical, especially considering the havoc and disruption the seizures have caused in the person’s life previously. However, an increase in stress is exactly what makes psychogenic seizures more likely to occur (stress and anxiety typically activate the seizure to begin with). Therefore, learning how to be mindful of prodromal symptoms is vital for the person to do what is necessary to avoid progression to a full-blown seizure — namely, by practicing anxiety and stress reduction.

Keeping a record (a journal) of seizure activity and each seizure’s antecedents will provide the client and counselor alike with vital information regarding when and where seizures are most likely to occur. This also keeps the client and counselor informed on therapeutic progress. Seeing one’s successes on paper can be inherently motivating and help foster the confidence that is so beneficial in combating anxiety and stress.

Anxiety/stress reduction: The next phase of treatment includes a variety of well-established and empirically verified interventions aimed at minimizing stress and reducing anxiety. This can be extremely effective in halting seizure progression.

I have found that a combination of deep breathing, progressive muscle relaxation and positive visualization can help reduce anxiety significantly. This intervention is the first choice for many of my clients suffering with PNES. Cognitive restructuring, including the recognition of stress-inducing schemata, identification of limited thought patterns and utilization of balancing thoughts that directly counter stress-inducing schemata, can also be effective in controlling anxiety and stress. Learning conflict resolution skills and receiving anger management counseling may be helpful for clients whose stress occurs more as anger. In short, by helping clients find the interventions that keep their stress levels low, counselors will give those who suffer with PNES the best chance to gain control over their seizures.

Biological considerations: Despite the psychological and emotional antecedents to psychogenic seizures, it is also important to consider physiological themes during treatment. Dietary factors are an element that deserves strong consideration in the treatment of nonepileptic seizures. When these issues affect seizure activity, they are referred to as physiogenic seizures.

I have found that many clients who suffer from psychogenic seizures also struggle with physiogenic seizures. For example, many PNES clients who regularly consume coffee will acknowledge that caffeine makes their seizures more likely and that reducing or eliminating its use is beneficial. This is most likely because caffeine stimulates the nervous system, increasing the possibility of elevated stress and anxiety levels and, thus, psychogenic seizures. In addition, avoiding foods with a high glycemic index will help to ensure that blood sugar levels remain stable. Unstable blood sugar levels can lead to hypoglycemia (low blood sugar), which, according to the Epilepsy Foundation, can trigger nonepileptic seizures.

Within the biological sphere of consideration, many patients find psychiatric medications to be beneficial. This is likely because the correct medications will help foster an emotional/mental state that reduces the likelihood of seizures occurring. It is important to note, however, that psychiatric medications do not treat the seizures directly. As is the case with other conditions, when a client with PNES is receiving treatment from a psychiatrist or other provider, it is very important for the counselor to keep open lines of communication with all said providers. In some cases, a change in psychiatric medications, or the addition of other medications, may result in an increase in seizure activity. It is necessary for the counselor to know what medication changes may have preceded the client’s seizure surge.

Working through trauma: A final phase to strongly consider when treating PNES is helping clients work through traumatic experiences. This phase of treatment can include a wide range of established interventions such as journaling, the empty chair, autogenic training, systematic desensitization and even family therapy, although many other effective interventions also exist for this stage. Myers suggests that the use of prolonged exposure may be helpful in the treatment of PTSD and may also be used to treat psychogenic seizures. At times, treatment will be more challenging depending on how many comorbid conditions are present.

In my experience, I have found that some clients will gain considerable control over their seizures before this final phase and will even opt out of this phase of treatment. As a client-centered clinician, I must respect a client’s choice to end therapy before this stage, although I always explain the potential benefits (and drawbacks) of engaging in this material.

Conclusion

As a clinician, I have found working with those suffering from PNES to be a very rewarding experience. It is a wonderful thing to watch these clients gain more confidence and hope as they slowly and methodically reduce their seizures and begin to regain what they lost while buried in the throes of their unfettered condition.

In their article “Psychogenic (non-epileptic) seizures: A guide for patients and families,” Selim Benbadis and Leanne Heriaud suggest that the competent treatment of PNES will result in the elimination of seizures in 60 to 70 percent of adults, and the results for children and adolescents may be even more impressive. The treatment of PNES is evolving as research continues. But the numerous empirically validated treatment options currently available to competent counselors can be just what PNES clients need to begin the journey of gaining hope and confidence, reducing seizure activity and taking back their lives from the grip of psychogenic seizures.

 

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Jason Wright is a licensed professional counselor and licensed marriage and family therapist at the HumanKind Counseling Center in Lynchburg, Virginia. He holds a doctorate in counseling. Contact him at dothejcbeat@aol.com.

Letters to the editor: ct@counseling.org

Counseling Today reviews unsolicited articles written by American Counseling Association members. To access writing guidelines, sample articles and tips for getting published in Counseling Today, go to ct.counseling.org/feedback.

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

The tangible effects of invisible illness

By Cathy L. Pederson and Greta Hochstetler Mayer April 26, 2016

A variety of invisible illnesses can greatly impact both the physical and mental health of individuals. Some of these illnesses are debilitating, preventing participation in the normal activities of daily living. Examples include chronic fatigue syndrome/myalgic encephalomyelitis, Ehlers–Danlos syndrome, fibromyalgia, lupus, Lyme disease, multiple sclerosis, myasthenia gravis, postural orthostatic tachycardia syndrome (POTS), regional complex pain syndrome and Sjogren’s syndrome.

These disorders disproportionately affect women and are not well understood by the health care Branding-Images_invisibleestablishment or the general community. Lack of understanding can lead to feelings of alienation and hopelessness for those suffering from these disorders.

Such was the case for Natalie (case study used with permission). Seemingly overnight, she transformed from a vivacious teenager at the top of her eighth-grade class to being virtually bedridden with fatigue, dizziness and chest pain. She visited a series of doctors in search of relief. A few months later, at age 15, Natalie’s life changed forever when she was diagnosed with POTS and Ehlers–Danlos syndrome, neither of which is curable or easily managed medically.

POTS is a disorder of the autonomic nervous system in which blood pressure, heart rate, blood vessel and pupil diameter, peristaltic movements of the digestive tract and body temperature are affected. Natalie’s Ehlers–Danlos syndrome caused additional pain — her connective tissues were weak and her joints would easily dislocate. During her freshman year of high school, Natalie was bound to a wheelchair. But as a sophomore, her dizziness and other symptoms were better controlled, so she went roller-skating with friends. She broke her wrist and injured her neck that evening, and her fall triggered debilitating migraines.

Although not widely studied, rates of suicide are believed to be higher in people with chronic or terminal illness. It is unclear if physical illness alone leads to risk of suicide or whether having an illness increases the chances of developing depression or hopelessness, which then increases suicide risk.

Painful, chronic illnesses and illnesses that interfere with a person’s everyday functioning are believed to be risk factors for suicide, especially among older adults. Some illnesses associated with increased suicide risk are AIDS, certain forms of cancer, Huntington’s disease and multiple sclerosis.

Risk of suicide is often linked with co-occurring mood, anxiety and substance use disorders in this population. However, people with invisible illnesses may not necessarily be clinically depressed or anxious; instead they may feel hopeless about their prognosis, experience real and anticipated future losses, and suffer from chronic pain — all of which are potent risk factors for suicide. The basic science of these individuals’ physical condition is not well understood, which makes developing medications to treat them difficult. Most treatments are aimed at individual symptoms rather than the root cause of the problem.

It takes Natalie three times more energy than normal just to stand because of her POTS. Even making minor movements around the house and engaging in daily routines, including eating meals and showering, can be exhausting for her and increase her symptoms. Her quality of life is similar to those with congestive heart failure or chronic obstructive pulmonary disease.

At 16, Natalie endured weeklong hospitalizations for headaches and other POTS symptoms. Medications didn’t offer relief. An honor student, Natalie missed more than 70 days of school during the last half of her sophomore year. She was no better by the end of her junior year and eventually dropped out of high school. She was behind in her work and struggled to complete projects and tests that would have been easy for her when she was healthy. “It was heartbreaking,” said Natalie’s mother about seeing her daughter transform from high achiever to high school dropout.

Natalie’s family had done everything right. They took her to see physicians, followed all prescribed treatment regimens, put her in counseling and supported her through her illness. Unfortunately, medical help was evasive and mental health care was marginal. Over time, Natalie’s friends drifted away. She couldn’t be physically active, participate in community events or hold a job. Eventually, she confronted insidious suicidal thoughts.

Working with those who are chronically ill

Many chronic illnesses are not terminal conditions, but they can severely impact a person’s quality of life for decades. For example, imagine that you have POTS. You feel lightheaded every time that you stand, and you faint several times per day. You experience neuropathic pain that feels like bees stinging your arms and legs. Hot flashes arrive without warning, and you begin to sweat. Despite possessing above-average intelligence, you have difficulty concentrating and analyzing problems. Simply taking a shower drains your energy, and it doesn’t replenish itself. Your physical isolation and illness create feelings of being misunderstood and not belonging.

These feelings only increase when you finally venture out of the house. People congratulate you on your “recovery.” Friends tell you how good you look. Distant relatives offer advice about how to get better. Even worse, you are bullied, called a faker or are the target of other derogatory comments. Your boss suggests that you would feel better if you only ate right and exercised. Even your spouse says, “Just get over it!”

Counselors should not fall into these traps when working with these clients. For someone who is chronically ill, even hearing “you look good” might be equivalent to “I don’t believe that you are really sick.” Normal niceties take on special meaning and ring hollow for those with chronic illnesses.

For most people, a doctor’s visit will result in control of their illness and restoration of their health. This isn’t true for many individuals suffering from chronic, invisible illnesses. Not only are they grieving their loss of health because of their physical condition but, often, they also feel dismissed and even traumatized by their health care practitioners.

Many with chronic illness feel ignored or abandoned by doctors and nurses. Some individuals have even been told to stop fainting or to bring down their heart rate, as if they are making choices meant to curry attention. Many physicians aren’t educated about these debilitating illnesses, and specialists in these fields often have waiting lists that are years long. Imagine how such repeated, negative experiences might erode hope for recovery and lead to suicidal thinking. What is a patient to do? In the case of those with POTS, the incidence of mental illness is the same as is found in the general population. The seemingly paranoid behavior these individuals demonstrate related to their health can be the result of medical mistreatment and neglect, and it is often justified and understandable.

Sadly, invisible illness can put even the strongest relationships in jeopardy. As days turn to months and years, the constancy of chronic illness can wear on marriages, friendships and family relationships. Missed holidays, birthdays and other social events leave loved ones feeling betrayed and wondering if the person who is chronically ill could make more of an effort to be present. Friends and family members often doubt whether their loved one is sick. Some acquaintances become confrontational with the person who is chronically ill, whereas others turn passive-aggressive. Because a person’s hair doesn’t fall out with chronic fatigue syndrome, no skin lesions appear with multiple sclerosis and no significant weight loss takes place with fibromyalgia, it is easy to forget the internal battles being waged every day by those with chronic illness.

Counseling professionals are well-positioned to address the fallout of living with chronic illness. Counseling can provide something that those with chronic illness who are feeling suicidal desperately need but are often missing — a safe place where they can be heard, validated and comforted. Most important, counselors are particularly skilled at uncovering suicide risk, advocating for underserved populations and providing clinical management of complex cases.

In Natalie’s case, she was depressed from grieving her loss of physicality, friends and school. She had found some relief through the use of an antidepressant and went to counseling regularly. In the midst of a flare, her physician switched Natalie to Prozac, which she had taken previously, without considering the fact that it might increase suicidal ideation in teenagers. Natalie never mentioned the suicidal thoughts to her family or doctor. Shortly after titrating to 30 milligrams, the 17-year-old attempted suicide.

Consider physical illness part of the problem

Many people with debilitating and invisible chronic illnesses are told that it is all in their heads. As a counselor, you may be the first person who truly listens and tries to understand what is happening in the individual’s life. Don’t be afraid to suggest that someone who has especially dry mouth and eyes (Sjogren’s syndrome), fainting episodes and difficulty thinking (POTS), debilitating fatigue that can’t be attributed to known causes (chronic fatigue syndrome/myalgia encephalomyelitis, POTS, fibromyalgia, lupus) or chronic pain (complex regional pain syndrome, fibromyalgia, POTS) should get a thorough checkup with a good physician.

Consider working collaboratively with these physicians as a multidisciplinary team. Recommend someone who is a knowledgeable problem-solver to investigate underlying physical causes for the person’s anxiety or depression. In addition, assess regularly for suicide risk, especially during transitions in levels of care, and take all warning signs and risk factors seriously. Labeling a person’s symptoms as part of a recognized disorder will often be a great relief to the person psychologically.

Physical limitations and their effect on counseling

As a result of chronic illness, routine activities can cause debilitating fatigue. Standing, walking, showering, riding in the car and even attempting to focus on a conversation can quickly exhaust those with chronic illness. As their fatigue increases, brain fog also tends to increase.

As counselors, it is important to understand and recognize the effort it takes for these clients to walk through your office door. Offering small encouragements will reinforce the proactive effort they have taken to maintain their mental health and improve their quality of life.

Also note that many people with invisible illness are particularly sensitive to light, noises and smells. This is particularly true when they are flaring. Simple gestures such as closing the blinds or turning off fluorescent lights may help them conserve their energy for their work with you. Similarly, avoiding the use of candles, strong scents or incense can be helpful.

Differentiating the physical from the psychological

When working with clients who are chronically ill, differentiating their physical issues from their psychological issues can be difficult. Consulting with knowledgeable health care specialists is essential. Taking the time to learn about a client’s chronic illness can greatly increase empathy, provide authentic understanding and help in guiding the person to proper medical care.

Counselors should be aware that the coping skills people use to deal with symptoms of chronic illness can look like warning signs for depression or suicide. For example, coping skills to manage many invisible illnesses, such as staying in bed and avoiding the shower, may be unrelated to depression or risk of suicide.

In addition, dysregulation of the autonomic nervous system causes surges of norepinephrine that can lead to insomnia, anxiety or panic attacks. A person’s lack of appetite can be related to gastroparesis (paralysis of the stomach) or other digestive motility issues. Debilitating fatigue and difficulty focusing/concentrating are also common problems connected to many invisible illnesses.

At the same time, it is important to remember that individuals with chronic illnesses that involve functional impairment and chronic pain are at greater risk for suicide, so warning signs such as suicidal thoughts and threats, previous suicide attempts and hopelessness must be taken seriously. In Natalie’s case, she had confided her suicidal thoughts to her counselor. Unfortunately, her parents and doctors were unaware of the extent of Natalie’s overwhelming emotional pain until she attempted suicide.

Follow-up care after hospitalization is critical

Pursuing inpatient hospitalization for people at serious risk of suicide can be a life-saving step. However, the current health care environment poses challenges to accessing timely, quality care when needed, even for those at imminent risk for suicide. Inpatient stays are difficult to secure, and lengths of stay are minimal at best.

Individuals often transition from an inpatient level of care to outpatient settings before their stabilization, and this is not easy for individuals with chronic illness or their families. In addition, being hospitalized for mental health problems can be further stigmatizing and demoralizing for the person with chronic illness.

The period immediately following hospital discharge is particularly dangerous for people at risk for suicide. Counselors operating from a multidisciplinary framework can mitigate this risk (with permission of the person with chronic illness) by coordinating care with hospital staff, medical specialists and key family members.

Providing continuity of care also helps with stabilization, engagement and retention in aftercare. Long-term counseling is necessary to strengthen the person’s reasons for living and to uncover the problematic situations and underlying psychological vulnerabilities that led to the suicidal crisis.

“After 12 inpatient days and nine partial hospitalization days, I’m starting to feel confident that she is on the road to recovery,” Natalie’s mother reported. Natalie’s medications were changed, and she passed the GED test in lieu of her high school diploma. She is now on the road toward college. We hope that sharing her story can help to prevent suicide attempts in other young adults with chronic illness.

 

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Cathy L. Pederson holds a doctorate in physiology and neurobiology. She is a professor of biology at Wittenberg University and founder of Standing Up to POTS (standinguptopots.org). Contact her at cpederson@wittenberg.edu.

Greta Hochstetler Mayer holds a doctorate in counselor education and is a licensed professional counselor. She is the CEO and initiated suicide prevention coalitions for the Mental Health & Recovery Board of Clark, Greene and Madison Counties in Ohio. Contact her at greta@mhrb.org.

Letters to the editor: ct@counseling.org