Coping with the stress and uncertainty of chronic health conditions

Living with a chronic health condition can be physically and emotionally stressful. Imagine waking up in the morning to searing pain because of reoccurring migraines or experiencing vision and speech problems and mobility challenges because of multiple sclerosis.

Common types of chronic pain or illness include low back pain, cancer, arthritis, fibromyalgia, diabetes, heart disease, amyotrophic lateral sclerosis (also known as Lou Gehrig’s disease), Alzheimer’s disease and dementia. No matter the type of chronic condition, they all have the potential to be unsettling, which often causes people to seek professional help.

Dakota Lawrence, a licensed professional counselor-mental health service provider who specializes in chronic pain, chronic illness and trauma, says many clients come to counseling when the pain is disrupting their lives and they feel things are “falling apart.” For example, the pain may cause some clients to be unable to perform work duties or make them withdraw from a sports team at school.

According to a 2020 report by the Centers for Disease Control and Prevention, 20.4% of adults were living with chronic pain in 2019, and 7.4% of adults had chronic pain that frequently limited life or work activities.

Lawrence says some clients think the pain or illness “can be fixed” by taking a break from stress, undergoing surgery or engaging in physical therapy. When people are in pain or sick, they tend to think that there is a single clear cause that can be treated or cured, he explains. But repeated doctor visits and medical tests often do not lead to clear results and proposed treatments may not offer much relief.

Clients may also take sick leave from work or even change jobs out of concern that they are burnt out and that stress is the cause of their illness, but then they notice that their pain or illness does not disappear despite the respite. “It’s only when [they’ve] gone from doctor to doctor and run out of answers that they tend to wind up in therapy,” Lawrence says.

When clients do come to counseling, his main goal is to help the client return to living a meaningful life with their pain or illness as well as the uncertainty that can go along with it.

No clear answers

One stressor that often comes with a chronic health condition is not having a clear understanding or explanation of what is going on with the body.

Alicia Dorn, a licensed clinical professional counselor in Columbia, Maryland, says often clients have been struggling with a chronic condition since childhood without ever having a medical diagnosis or a clear understanding of what kind of health issue they are dealing with or its origin. The reason for this, she says, is that the medical professionals who treated them as children often assumed they were simply experiencing growing pains or overreacting, so they did not conduct additional diagnostic testing.

Sometimes an unsupportive family, limited resources or little information about what has caused the person’s symptoms can delay a diagnosis in childhood and adulthood, notes Dorn, who specializes in chronic illness and chronic pain. She says this leaves many adult clients feeling worried and concerned about having to convince medical professionals that they have a condition that needs immediate attention.

Lawrence, co-owner of a private practice in Murfreesboro, Tennessee, says the frustration of not having a formal diagnosis only leads some clients to discover that “there’s not any clear answer as to why this [the chronic condition] is happening and whether it will get any better.”

And those who do receive a diagnosis face another challenge: coming to terms with living with a life-altering condition. A diagnosis can be scary, Dorn admits, “because it’s something that likely will not have a cure, and it will change how they live for the rest of their lives.” For example, the chronic condition may mean some clients will have to deal with “persistent suffering,” which can make it harder to live the type of life they want, she says. And for many people, a medical diagnosis can also bring their own mortality into question.

Changes to self-identity and daily life

Chronic conditions can affect every aspect of a client’s life — work, school, family, friends, recreational activities and even the way they view themselves.

Lawrence says before clients discover they have a chronic condition, they may see themselves as strong, independent and able to take care of themselves and the people in their lives. However, the physical and mental limitations that can come along with chronic conditions can alter the client’s identity and leave them feeling lost and unsure of who they are, he says. For example, clients may find that they are not able to do simple things, such as mowing the lawn, playing with their children or enjoying certain social activities with friends.

Chronic conditions can also lead to relationship problems. The ability to be physically mobile and connect emotionally with other people in meaningful ways can fluctuate from day to day, Lawrence says. In addition, a relationship with a spouse or partner may have become strained because their significant other is beginning to feel more like a caregiver than a life companion or romantic partner, he adds.

Some clients report that the physical pain and depression they experience makes them feel less sexually active and less inclined to sleep or eat regularly, adds Ryan Ibarra, a licensed professional counselor (LPC) at Foothills Neurology, a medical group practice in Arizona that specializes in providing behavioral health treatment for neurological disorders.

Research also shows that living with chronic pain or a chronic illness can make people more likely to struggle with mental health disorders, such as depression, anxiety, posttraumatic stress disorder, suicidal ideation and grief. Of the people who took a Mental Health America screening, those with chronic health conditions were at higher risk for a mental health condition. This includes 79% of people who struggle with chronic pain, 75% of those with heart disease and 73% of people with cancer.

Ibarra, who specializes in chronic diseases, says clients who have chronic health conditions may also report struggling with fatigue, stomach issues, sleep problems and panic attacks.

Dorn says clients often come to therapy because they need help figuring out if they will be able to make the adjustments that will enable them to maintain a measure of stability in their lives.

“Every day, clients are reminded of a condition that they didn’t ask for [and] that wasn’t necessarily their fault but is making it much more difficult to be the person they want to be,” she explains, noting that clients are often focused on managing their health and may pretend they are feeling “OK” for those around them.

Assessing for chronic health conditions

Because some clients may have experienced trauma and may not feel comfortable disclosing their chronic condition in session, particularly if it is not visible, counselors should assess for chronic ailments during the intake process. Lawrence recommends clinicians ask about the client’s health history using a checklist of physical health conditions (such as diabetes, fibromyalgia and cancer) or physical health symptoms, (such as pain, chronic fatigue and dizziness).

Counselors can ask clients simple and direct questions, he continues. For example, they can say:

• When was the last time you saw a health care provider?
• Are there any current or previous medical diagnoses that are causing significant stress?
• What do you do in your free time and what activities give your life meaning? On a scale of 0 to 10, how engaged have you been with these activities in the last six months?
• How many hours of sleep do you average a night? What did you eat yesterday?
• How often do you get sick? Once or twice a year? Once every few months? Every few weeks
• When you get sick, how long does the illness typically last? On a scale of 1 (almost never) to 7 (almost always), how often are you in pain? And how intense is the pain on a scale of 0 to 10?

Tameeka Hunter, an assistant professor in the Psychology and Counseling Department at Palo Alto University in California, says it is important that clinicians ask about the presence of chronic illnesses and disabilities, but they shouldn’t assume that chronic conditions are the “problem” or presenting concern.

Counselors also need to be aware of their own implicit and ableist biases before working with this population, Hunter adds. She recommends counselors use the Implicit Association Test, developed by Project Implicit Research at Harvard University.

“It measures the strength of associations between concepts and evaluations or stereotypes to reveal an individual’s hidden or subconscious biases,” explains Hunter, an LPC and certified rehabilitation counselor who lives with a disability. (For more, see the sidebar “How ableism affects people with chronic health conditions.”)

Counselors can also review the American Rehabilitation Counseling Association’s Disability-Related Counseling Competencies to learn the specialized skills needed to effectively serve clients with chronic health conditions and disabilities, she says.

Noticing and regulating emotional responses

Mindfulness-based therapeutic approaches and acceptance and commitment therapy (ACT) can help clients living with chronic pain or illness gain an awareness of the thoughts, emotions and bodily responses that can be a part of their condition or the result of additional life stressors, Dorn says.

Doctor’s appointments can be one source of stress or anxiety. Initial appointments with a new provider, general appointments, follow-ups with a specialist and appointments for test results or a potential diagnosis can all create anxiety for clients, Dorn explains.

“Some clients fear being told nothing is wrong when they feel unwell, being dismissed by a provider or feeling they have no autonomy over their body and care,” she adds. “This is a form of medical gaslighting that makes navigating the health care system a scary endeavor for clients.”

Dorn recommends using mindfulness and ACT techniques with clients who may feel anxious or nervous about going to the doctor for an appointment. For example, counselors can ask clients a series of questions that encourage them to gently observe the thoughts, emotions and body sensations that may come up as they prepare for the visit, she says. These questions can include:

• What worries come to mind when you think about the appointment?
• How do these worries show up in your body right now?
• If you could put all the emotions you feel about the appointment into words, what would they be?
• What could help you feel more supported and heard during your appointment?
• What questions or observations would you like to discuss with your doctor?
• How can you show your body compassion when you’re feeling worried during the appointment?

Dorn says she also prepares a plan with the client that includes what to do the night before, the day of, during and after the appointment. She walks them through deep breathing exercises and body scans to practice calming their nervous system and she discusses how clients can advocate for themselves as they navigate the health care system. Counselors can also encourage clients to bring a family member or friend with them to the appointment, so they feel supported and heard, Dorn adds.

Dialectical behavior therapy (DBT) is another approach that clinicians can use to help clients develop emotional regulation skills, Lawrence says. He suggests counselors use Check the Facts, a DBT skill that helps clients notice and evaluate their emotional response to a situation. This exercise consists of six reflective questions that help clients determine whether the event itself, their interpretation of the event or a combination of both is causing their emotion.

“The goal is to help clients identify their emotions, describe the situation or trigger that caused it as objectively as possible and separate the assumptions, presumed threats, cognitive distortions and catastrophic thinking that may be projected into the situation,” Lawrence explains.

He says this DBT exercise also helps clients recognize when their response is ineffective in helping them navigate the situation. For example, a client’s emotion (such as anger, sadness or anxiety) may fit the situation, but the intensity of the emotion may be out of balance. Sometimes an emotional response such as anxiety can be helpful for people living with chronic illness. The key, he says, is to realize when the response becomes problematic. A client with an autoimmune disorder, for instance, may need to be hypervigilant when they go to the doctor’s office to make sure their hands are clean and that they keep an appropriate distance from others who may be sick, Lawrence says. “But if the intensity of their anxiety grows to the point where a client begins to isolate at home and miss their doctor appointments, then we’ve got a problem that can be just as bad for their health.”

“Clients run into problems with their emotions when they try to avoid feeling the emotion all together or when the intensity of their emotion is driven by other factors, such as genetics, beliefs, thought distortions, etc.,” he stresses. This can lead to a disproportionate, and often ineffective, response. By using emotional regulation skills such as Check the Facts, clients can learn to better understand their emotions and make sure they are using emotions in functional, adaptive ways, he says.

The importance of validation

Clients with chronic pain and chronic illness can often feel alone and invalidated and they may even experience medical trauma in the process of trying to find a diagnosis. Dorn, who lives with a chronic illness, says this kind of trauma results from a series of stressful events that are related to a client’s health and make it difficult to feel safe in a medical environment.

For example, in some cases, medical providers can be insensitive and write clients off as people who are seeking drugs or are being dramatic, Lawrence notes. Some medical providers may even tell clients that the chronic condition is “all in their head,” he says.

But even when medical providers do believe clients have a chronic condition, Lawrence says that seeking a medical answer for the cause or to alleviate suffering can mean invasive procedures or surgeries that don’t always pay off or may further complicate the matter.

“The persistent invalidation of their lived experience and invasive exploration of their body can result in medical trauma for some clients,” he notes.

Whether it’s a toxic relationship with a doctor or a scary medical experience, clients can often show signs that are similar to posttraumatic stress disorder, Dorn adds. As a result, clients may avoid medical appointments or refuse to talk about their health issues. They may also develop increased worries about their condition and a mistrust of medical professionals.

According to Dorn, medical trauma and gaslighting can lead to heightened chronic health symptoms and even a decline in a client’s overall physical or mental health if they don’t get the support they need.

The counselors interviewed for this article say that what is often most helpful for clients living with a chronic health condition is to work with a clinician who validates their lived experience and helps them advocate for their own well-being.

Ibarra sometimes shares the following hypothetical story with his clients: Imagine entering a room filled with hundreds of people and someone asks, “How many of you struggle with depression and anxiety?” Almost everyone in the room will probably raise their hand. Now imagine someone asks, “How many people struggle with chronic back pain or epilepsy?” Fewer hands would go up, which shows that living with chronic pain or illness is often a more isolated journey.

Sharing this story “helps validate the client when they are feeling alone and like no one understands,” he says. “It makes them feel seen by me as their therapist.”

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How ableism affects people with chronic health conditions

Tameeka Hunter, an assistant professor in the Psychology and Counseling Department at Palo Alto University in California, stresses the importance of acknowledging that systemic oppression and ableism can also cause psychological distress among clients with chronic health conditions.

Living in an oppressive society where ableism, as well as racism, sexism, homophobia, transphobia and other biases, are commonplace makes people with chronic health conditions and disabilities susceptible to bias and harmful stereotypes, notes Hunter, whose research areas include intersectional diversity, social justice and the resilience of people living with chronic illnesses and disabilities. She says people with chronic conditions and disabilities are often viewed as “incapable” or as a “burden” to society.

Ableism is “the systemic discrimination against and oppression of people with chronic illnesses and/or disabilities,” Hunter explains, and it manifests in many ways and exists on different levels of society. It can be part of a health care provider’s belief system or the belief system of a loving, well-meaning family member.

For example, internalized ableism is when a person consciously or unconsciously believes in the harmful messages they hear about people with chronic illnesses or disabilities, says Hunter, a licensed professional counselor and certified rehabilitation counselor.

“A person [with ableist beliefs] may feel that disability accommodations are a privilege and not a right or that the presence of chronic illnesses and disabilities makes a person ‘less than’ nondisabled people,” she notes.

Hunter describes three other forms of ableism: Hostile ableism includes openly aggressive behaviors or policies, such as bullying or violence. Benevolent ableism views people with disabilities as weak or in need of rescuing and can undermine a person’s autonomy. Ambivalent ableism is a combination of the two other forms and manifests when a person treats someone with a disability or chronic health condition in a patronizing manner and then switches to being hostile when the person living with the chronic illness or disability rejects unsolicited advice or “help.”

Ableism affects people differently depending on how others perceive their condition or disability, Hunter notes. For example, how people discriminate against those with visible chronic illnesses and disabilities is different from how they treat those with invisible chronic illnesses and disabilities.

“People with invisible chronic health conditions are often asked to ‘legitimize’ or ‘prove’ that their chronic health conditions exist,” she says. “They are often told they are exaggerating or ‘lazy,’ particularly if the conditions relapse and remit. For those of us with obvious physical disabilities, being asked to legitimize our disabilities still happens but less often.”

Hunter strongly suggests counselors invest in clinical training and examine their own ableist beliefs. She recommends practitioners attend trainings hosted by rehabilitation counselor educators to learn more about effective therapeutic approaches for this population and about their rights and protections based on the Americans with Disabilities Act of 1990.

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Lisa R. Rhodes is a senior writer for Counseling Today. Contact her at lrhodes@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.