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?
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.
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 email@example.com.
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 firstname.lastname@example.org.
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 email@example.com.
Letters to the editor: firstname.lastname@example.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.
Related reading, from the Counseling Today archives: “The tangible effects of invisible illness” by Cathy L. Pederson and Greta Hochstetler Mayer
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.
One of the reasons for high rates of suicide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is the disease is so very severe that quality of life is astonishingly low. Even compared with other severe diseases.
ME/CFS quality of life scores are LOWER than schizophrenia, bleeding ulcer, multiple sclerosis, congestive heart failure, depression, end stage renal failure, stroke, type 1 diabetes, rheumatoid arthritis, and hep C.
Functional status in ME/CFS patients is severely impaired, but not mental health and emotional role functioning, according to a recent CDC multisite clinical assessment.
As person with a chronic illness, this article feels validating and elaborates on many of my frustrations with typical mental health care!
I wish the article had more detailed suggestions for assessing depression and suicidality. Instead of the typical surveys that rely heavily on physical symptoms, I recommend the Hospital Anxiety and Depression Scale (HADS) and the Collaborative Assessment and Management of Suicidality (CAMS). This article on Identifying and Managing Suicidality in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is also useful and validating: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8227525/