Using A Holistic Approach to Therapy with Clients Experiencing Chronic Illness, Disability, and Mental Health Challenges

• Prevalence of Chronic Illness/Disability in the United States
• Relationships and Chronic Illness/Disability
• Finances, Work, and Future Self in Chronic illness/Disability
• Wellness Culture, Community, and Chronic Illness/Disability

Prevalence of Chronic Illness/Disability in the United States

The presumption that “typical” abilities and wellness encompass the norm is a viewpoint that pervades United States policies, infrastructures, and societal expectations. The reality is that the majority of the US population grapples with chronic illnesses and disabilities, challenging the conventional definition of “normalcy.” While many associate illness with isolated incidents, dramatic and prolonged interruptions in otherwise regular lives — along with the prevalence of chronic conditions — indicates that illness is, in fact, more typical of the human experience than not.

According to data from the Centers for Disease Control and the Rand Corporation, over half of Americans (51.8%) contend with at least one chronic condition, whether physical or mental. Some estimates are that 42% of the population faces multiple chronic conditions. By comparison, according to the European Council of the EU, one in four, or 25% of European adults live with a chronic illness/disability. These statistics not only reveal the widespread impact of chronic illness but also emphasize the need to shift cultural perspectives surrounding health and ability. To be absolutely clear, in the United States, chronic conditions are the norm, not the exception. In his recent book “The Myth of the Normal,” Gabor Maté challenges prevailing notions of normalcy and underscores the ubiquity of trauma and illness within the diversity of human experiences. Exploring biopsychosocial aspects of chronic illness and disability, Maté exposes fundamentally unhealthy cultural constructs that shape our understanding of what it means to be “normal.” Moreover, in response to an unhealthy environment, Maté asserts that illness is a valid response. His work resonates deeply with my practice, as it highlights the importance of acknowledging the sequelae of trauma in the vast spectrum of human existence.  

As a Clinical Rehabilitation Counselor, my training encompasses both the medical and psychosocial aspects of chronic illness and disability. Moreover, my own personal journey as a cancer survivor and someone diagnosed with Crohn's disease enables me to meet clients from a perspective of lived experience. This experience underscores the importance I place on applying a comprehensive holistic approach to mental health in the context of chronic conditions many of my clients experience. My work in a small group practice specializing in supporting clients with trauma, chronic illness, and disability is a testament to the prevalence of such experiences.

Within my caseload, 95% of clients navigate the challenges of multiple chronic physical and mental conditions, often relying on state-subsidized insurance for healthcare. Among these individuals, approximately 60% identify as female, 25% as gender fluid or transgender, and 15% as male. Their narratives underscore the multifaceted nature of dependence and autonomy across various dimensions of life. From physical and financial to emotional and sexual realms, the complexities of living with chronic conditions influence every aspect of their existence.

For individuals grappling with chronic illness, the connection between past trauma and present health challenges cannot be overlooked. More often than not, these clients report elevated Adverse Childhood Experiences (ACEs) scores, revealing a complex interplay between past trauma and present health challenges. My integrative approach encompassing trauma-informed care, empathy, empowerment, and holistic healing includes attention to my client’s experience of their body. Attention to physical sensations including interoception and proprioception, breath, movement, and reflex patterns, allows me to guide them towards a path of resilience, self-acceptance, and well-being. Recognizing the intricate threads that weave together past experiences, present struggles, and future aspirations creates a space where my clients feel heard and equipped to navigate the complexities of their health journey with resilience and clarity. 

Relationships and Chronic Illness/Disability

One of the prevailing challenges faced by individuals with whom I work who have chronic illness and disability shows up in power dynamics within close relationships. Dependence on a partner for various types of support including financial and logistical, coupled with chronic pain and the struggle to balance gratitude and self-worth, can erode an individual's sense of agency. For those grappling with conditions such as Crohn's disease, fibromyalgia, multiple sclerosis, or rheumatoid arthritis, the unpredictability of their conditions makes planning for the future a daunting task. As a result, vacations, celebrations, and even daily routines are frequently disrupted. The demands of work often deplete their energy, leaving their partners to shoulder the responsibilities of managing a household and caring for children. The strain on intimacy and sexual relationships adds another layer of complexity.  

Partners of those with chronic illness and disability experience their own set of challenges, leading to feelings of frustration and helplessness. Their desire to provide support can transform into a sense of powerlessness as they navigate the complexities of medical interventions, lifestyle changes, and emotional well-being. The dynamic between partners can quickly shift from a place of caring support to caregiver exhaustion and burnout, a source of resentment that creates a cycle of mutual dissatisfaction.

In my therapeutic practice, it is not uncommon for clients to request involving their partners in sessions. Drawing from my unique perspective as someone who navigates a chronic illness while also being a partner to someone with health challenges, I provide insight that resonates with their experiences. This shared understanding fosters open dialogues that explore the intricacies of relationships within the context of chronic conditions.

One poignant example underscores the profound impact of childhood experiences on an individual's journey. A client shared a harrowing memory of their father monitoring their food intake during meals — threatening punishment if they exceeded a prescribed number of bites. This history of food-related trauma has woven itself into their present struggles with Small Intestinal Bacterial Overgrowth (SIBO), a condition marked by pain, diarrhea, gas, and bloating due to bacterial overgrowth in the small intestine. While the impulse to connect trauma to illness is compelling, the client's journey also involves a series of infections necessitating antibiotic treatment over time.

This client’s partner, in their well-intentioned efforts to support, inadvertently triggers their traumatic memories when attempting to manage the client’s food choices. The need for a restrictive diet as part of SIBO treatment further compounds their emotional turmoil, fostering feelings of deprivation and punishment as they strive to heal. Addressing this intricate interplay of trauma and health within the therapeutic space requires a delicate balance.

In a joint session involving both the client and their partner, I employed empathetic communication to navigate their complex dynamic. While acknowledging the partner’s genuine desire to provide assistance, I simultaneously asserted the client’s agency and authority over their own body and treatment. Employing the metaphor of the client as the “captain of their ship,” I emphasized that their body is their vessel, and they remain firmly in control. This approach is of paramount importance, particularly for individuals who already feel a sense of bodily discord and lack of control.

Additionally, it is helpful to recognize the partner’s role in the client’s healing journey. Acknowledging the partner’s commitment to honoring the client’s autonomy becomes an act of spiritual significance, aligning with their broader values. This dual recognition — empowering the client’s autonomy while honoring the partner’s supportive stance — fosters a therapeutic environment that not only addresses the physical aspects of chronic illness but also attends to the emotional, psychological, and relational dimensions.

In another case, my client grappled with chronic Lyme Disease within a relationship plagued with communication challenges, describing their partner as “unresponsive.” When they came for a family session whose purpose was to help them talk about the ramifications of her disease, I realized her partner was very likely on the spectrum. Though not his counselor, I was able to introduce both of them to this possibility, explain how this might be contributing to their difficulties, and help him connect with a counselor of his own.

Finances, Work, and Future Self in Chronic illness/Disability

For those clients navigating a chronic condition on their own, their lives are often precariously situated on what feels like the brink of financial ruin and collapse. With chronic pain or with an unpredictable condition exacerbated by stress, work is a double-edged sword. On the one hand, it may confer some security, sense of accomplishment, and self worth. On the other hand, it may aggravate certain illnesses by contributing to stress and may prevent people from qualifying for federal or state aid.

Most of my clients with chronic illness have applied for disability and are on their second or third appeals. They hang in a limbo where making money can compromise what little chance they have. Barring paralysis or a progressive condition, their chances of receiving disability are slim to none. These clients often seek work they can do from home. They are unwilling to take on student loans because of the precarity of their health. Some earn a living from piecemealing several jobs.

Whenever possible, I try to coordinate care with vocational rehabilitation (VR) services offered by the state which helps people find and obtain work suitable to their strengths and limitations.  

In one case of a client with chronic depression and difficulties which led to him losing his job, I advocated for him to receive a neuropsychological evaluation. Both the client and I felt he was on the spectrum. This enabled him to receive help from VR for job placement and support. By helping him find work that made use of his strengths while limiting his interactions with people, his depression improved along with his self-esteem. Whether living with a chronic physical or mental condition, it is important to remember everyone has strengths as well as limitations.  

Moreover, chronic illness, disability, chronic pain, and trauma can profoundly alter one’s sense of self. As mentioned earlier, the challenges posed by unpredictable and intermittent conditions make it challenging for individuals to plan for their future. This absence of foresight can have far-reaching consequences, undermining clients’ ability to envision a future version of themselves — a capacity often taken for granted. This lack of future-oriented thinking leaves clients susceptible to a multitude of setbacks, affecting their physical, mental, reproductive, financial, and educational well-being.

The ability to manage finances is a skill, yet those who lack both financial resources and a sense of their future self tend to make choices that perpetuate their financial struggles, leading to increased poverty. I’ve come to understand that these clients find it difficult to delay immediate rewards for a future date. Without a clear vision of their existence in the next 5-10 years, they prioritize immediate gains, which is understandable.

A client who was in the foster care system and spent a period of time houseless in their teens worked in the food service industry. Though experienced, their lack of formal education meant they often worked under managers with a degree but less actual experience than they had. Frustration with poor management led to frequent job dissatisfaction. Chronic but unpredictable illness limited their ability to work more than 25 hours per week. This kept them stuck in tip-dependent but ultimately unsatisfying work. Their dissatisfaction influenced their feelings about work in general.

During a period of unemployment, I encouraged them to explore alternative options. It became clear that they had only the barest sense of how much money they actually needed to cover expenses. A critical therapeutic intervention involved helping them create a budget in order to more accurately assess the benefits of a job that offered no tips, but more hourly pay. Even at 25 hours/week, they stood to cover their costs better than with sporadic food service work.  

To arouse clients’ sense of possibility, I lean on existential humanistic and Buddhist psychological teachings. None of us knows when we are going to die. People with long-standing conditions, both physical and psychological, live long and productive lives. To come to terms with having a finite amount of time with no sense of how much time is left is an essential human challenge. My clients experience grief over unlived possibilities. These feelings must be acknowledged and included. One client whose career was interrupted by an ependymoma (a spinal tumor that recurred twice) has grappled not only with ensuing disability from the spinal tumor, but ways she never took her career seriously even before the onset of the disease. Often disease itself becomes a catalyst for deeper exploration and participation.

Wellness Culture, Community, and Chronic Illness/Disability

Our culture’s pervasive and inescapable preoccupation with fitness, appearance, and social status is another hurdle facing people with chronic illness or disability. Research has demonstrated the undeniable mental and physical benefits of engaging in exercise and community. But for those who struggle with chronic illness and disability, these arenas are often outside their reach. These clients find themselves frequently isolated by the exigencies of their illness.

Socializing requires energy, and in the face of household or work demands, friendships fall by the wayside. The COVID pandemic resulted in yet another barrier for people with chronic illness and disability who are at risk of more serious infections. For those with mobility issues, opportunities to exercise are limited. One client with Cerebral Palsy receives only 6-10 sessions of physical therapy per calendar year.

Part of providing holistic therapy is helping clients discover ways to include movement and connection in their daily routines. As an example I work with severa,l clients affected by Ehlers Danlos Syndrome (EDS). EDS is a genetic condition that affects collagen, our body’s connective tissue. It ranges from mild involvement that creates hypermobility in the joints, requiring avoidance of extreme movement practices, to so severe it can cause heart and other organ failures.  

I frequently incorporate QiGong movement exercises in sessions, or I provide clients with short videos to follow. QiGong, a 4,000-years-old mindfulness based movement practice used throughout Asia for health maintenance, healing, and longevity, has been shown to mitigate pain, lower cortisol levels, and improve self-efficacy perceptions. The movements are gentle enough to not strain the body, yet require focused attention. They can be performed standing, seated, or supine. 

For those clients who are housebound much of the time, the need for community is often met by online connections. One client maintains an active online presence and connects through advocacy and providing education about their condition. For a trans teen client attending online school however, face-to-face interactions with peers is missing and contributes to their feeling alone. Like many people his age, he’s reluctant to learn to drive, and though he has applied for many kinds of work, he’s not been able to find employment due to his age. These circumstances compound his isolation. Group therapy has sporadically met those needs, but isolation remains a significant issue for those with chronic illness.

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In my personal and clinical experience, addressing the mental health needs of individuals with chronic illness and disability requires a holistic and empathetic approach. As a therapist, I have found it essential to challenge prevailing cultural norms, advocate for the acceptance of diverse abilities, and provide a safe space where clients can explore their unique journeys.

At the outset, chronic illness and trauma can feel like burdensome lead, weighing down the spirit and clouding our sense of self. The challenges posed by these experiences may appear insurmountable, the darkness can be overwhelming. Yet, it’s in the crucible of adversity that a profound alchemical process unfolds.

In essence, the alchemical journey of turning lead into gold mirrors the transformative power of the human spirit when faced with chronic illness and trauma. It reminds us that within the depths of our struggles lies the potential for profound growth, healing, and the emergence of our most radiant and precious selves. By fostering open conversations, cultivating self-advocacy, and nurturing supportive relationships, I, and hopefully fellow clinicians reading this, can empower their clients to embrace their identities and navigate the complexities of life with resilience and grace.   

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