Chronic Illness & Mental Health: An Introductory Guide

The Psychological Effects of Chronic Illness

When someone is diagnosed with a chronic illness, a lot may change. Depending on the diagnosis and how severe it is, you may experience changes in your lifestyle, level of physical functioning, and even find that your role in your family and community changes, too. You also must deal with the stress of learning how to manage your illness, with the knowledge that it may exist for the rest of your life.

“Being diagnosed with chronic illnesses such as multiple sclerosis can take significant emotional adjustment and can include many reactions such as grief, anxiety, anger and guilt. How each person copes with these reactions depends on many factors, including individual mental health histories, personal coping styles and sense of resilience, family, work and other social supports. If the chronic illness is progressive, reactions can ebb and flow with the ups and downs of the disease course.” – Andrea Arzt, LCSW, MSCS, Director of Healthcare Provider Engagement for the National Multiple Sclerosis Society, ²⁰

You might expect that anyone dealing with a chronic health condition would have a certain level of distress. The amount of stress associated with chronic illness is related to how overwhelming or threatening it seems. Many people may struggle to feel good in their daily lives, comfortable in their bodies, or connected in relationships. Feelings such as grief, sadness, worry, or anger may be typical. However, if feelings of distress are impeding your ability to care for yourself or function in your daily life for an extended period of time, it may make sense to seek help from a professional.

Depression and Chronic Illness

People with chronic medical conditions have a higher risk of developing depression than otherwise-healthy people.^1,2,3,4,5,8 Those who have co-occurring depression and chronic illness are also likely to have more severe symptoms of both illnesses, increased difficulty adapting, and higher medical costs than those who have chronic illness without depression.¹

Symptoms of sadness, loss of pleasure and low self-esteem may follow a recent medical diagnosis for many people, but may fade as the person adjusts or as physical symptoms improve.¹ Other times, however, these depressive symptoms can persist for an extended period of time, indicating a potential diagnosis of clinical major depression.

Common symptoms of depression include:¹

• Feeling sad, irritable, or anxious
• Feeling empty, hopeless, guilty, or worthless
• Loss of pleasure in usually-enjoyed hobbies or activities
• Fatigue and decreased energy, feeling listless
• Trouble concentrating, remembering details, and making decisions
• Not being able to sleep, sleeping too much, or waking too early
• Eating too much or not wanting to eat at all, possibly with unplanned weight gain or loss
• Thoughts of death, suicide, or suicide attempts (This symptom should always be checked with a professional)
• Aches or pains, headaches, cramps, or digestive problems without a clear physical cause and/or that do not ease even with treatment

If you’re experiencing symptoms of depression for most of the day, most days for two weeks or longer, it is advised to consult with your medical provider, licensed therapist, or psychiatrist.

Isolation & Loneliness

“Isolation and loneliness are important factors in increased depression. Emotional loneliness, feeling that you do not have others who understand you or what you are going through, tends to feed on itself and it can become harder and harder to reach out to others, increasing the depression and loneliness. Being forced by illness or accessibility issues secondary to the illness to remain isolated in their homes, or even in bed, can lead to people feeling that they are living outside of the functioning world. All of this can become a cycle that affects resilience and coping, and may even lead to pushing others away,” says Arzt.

Relationship Challenges

Chronic illness doesn’t just affect the person who received the diagnosis. Family members often have to change their roles to accommodate new health concerns, which can be straining on everyone involved.

According to Arzt, “The same adjustment concerns that affect the person living with the illness occur for other family members, each in their own time and way. Family roles, communication and functioning can all be affected, and the problems can become worse if they are not addressed. As the illness advances and the caretaking needs of the person with the chronic illness become greater, helping family members remain in their roles of parents, children or partners and not allowing the caregiving tasks to become too overwhelming is a constant challenge. Caregiver burden can take a toll emotionally, physically and financially.”

What Chronic Illnesses Are More Likely to Cause Mental Health Concerns?

Mental and physical health are interconnected, and a change in one will almost always influence changes in the other. However, there are some chronic illnesses and conditions that can cause people to be more susceptible to mental health concerns.

Chronic illnesses most likely to cause mental health concerns include:

Cancer

About one in four people with cancer have depression, and those who have had clinical depression before are more likely to have depression after their diagnosis.³ There are a multitude of cancer types and stages, and a person’s mental health may change depending on the severity of the illness. Experiencing depression can be influenced by major changes in quality of life, physical and social functioning, and sense of hope.

Diabetes

The CDC reports that people with diabetes are two to three times more likely to have depression than people without diabetes, and 20% more likely than those without diabetes to have anxiety.⁴ This can be caused by several factors, including the burden of disease management inherent with diabetes.

COPD

Those who are diagnosed with chronic obstructive pulmonary disease (COPD) are more likely to have anxiety and depression than the general population.⁵ Shortness of breath, a common symptom of COPD, can easily induce feelings of anxiety and even panic attacks. COPD also may cause feelings of guilt, especially if the person has a history of smoking.

Heart Disease

Depression, anxiety, and PTSD can occur after cardiac events such as heart failure or heart attack.⁶ This can be caused by fear of another cardiac event or decreased quality of life and functionality that may occur as a result of the illness.

Stroke

Because strokes affect the brain and how it functions, those who have had a stroke can experience emotional liability as a direct result of brain damage. Feelings of depression are common right after a stroke, but prolonged depression can also occur.²

Multiple Sclerosis (MS)

About 50% of individuals with multiple sclerosis have depression and about 50% have anxiety—both can exist together or be mutually exclusive.⁷ Depression can also be a symptom of MS, especially in the early stages, not just a reaction to the disease.⁷ Anxiety in those with MS seems to be reactionary, related to uncertainty for the future and declining functionality.

Parkinson’s Disease

Some studies reflect a large number of individuals with Parkinson’s disease have depression, often worsening as they become aware of the losses around decreasing functional and cognitive abilities.²

Alzheimer’s Disease

Similar to Parkinson’s disease, as people become aware of their deteriorating capacity in the early stages of Alzheimer’s, some may experience depression.²

HIV/AIDS

People with HIV/AIDS have a higher chance of developing mood, anxiety, and cognitive disorders than the general population, with depression being the most common.⁸ This may be due to the burden of managing medical treatment and stigma associated with HIV/AIDS.

Chronic Pain

Chronic pain has been linked to anxiety, depression, dependence on opioids, restrictions in mobility, and reduced quality of life.⁹ Chronic pain inherently makes it more difficult for people to do the things they normally enjoy, and this decreased functionality can contribute to poorer mental health.

Can Mental Health Conditions Cause Chronic Physical Problems?

Mental health conditions may lead to or exacerbate chronic physical problems. Those with clinical depression are at increased risk of developing cardiovascular disease, diabetes, stroke, osteoporosis, and Alzheimer’s disease.¹

Although further research is needed on this topic, it’s easy to see how symptoms of depression could lead to a diagnosis of chronic illness or exacerbate one that already exists. For instance, symptoms of depression include loss of motivation, lack of appetite, fatigue, and trouble sleeping. Someone experiencing these symptoms for an extended period of time is likely to have a harder time taking care of themselves and engaging in health-promoting behaviors like exercise, healthy diet, and compliance with medication.

Those experiencing distress related to anxiety and PTSD may also be at risk for chronic physical conditions. Over time, increases in heart rate, blood pressure, reduced blood flow to the heart, and higher levels of cortisol may contribute to metabolic disease, heart disease, and calcium buildup in the arteries.⁶ It is important to maintain regular medical appointments to monitor potential chronic disease susceptibility and promote your overall well-being.

Physical Symptoms as Expressions of Emotional & Mental Health Issues

When emotional and mental health issues cause physical symptoms, these are known as somatic symptoms or somatization. This is actually more common than you may think—5-7% of all patient concerns in primary care are estimated to be somatic, and among people with somatic symptoms, 20-25% go on to develop chronic somatic illness.²¹

While the exact cause of somatic illness is not known, there are several known risk factors. These include childhood trauma or neglect, a history of substance misuse, or certain personality disorders. It is important to remember that, although these symptoms begin as psychological symptoms, they are very real and can cause a great deal of distress.²¹

Medications for Chronic Illness & Potential Mental Health Impacts

All medications have side effects that can vary for each person. Whenever you are given a new medication, it is important to discuss potential side effects with your medical provider.

According to a study in Dialogues in Clinical Neuroscience, the following medications commonly prescribed for chronic illness may contribute to psychiatric side effects:¹⁰

• Baclofen (muscle relaxant, MS, spinal cord injury): Depression, anxiety, psychotic symptoms
• Beta-Blockers (manage abnormal heart rhythms): Depression, mania, anxiety, psychotic symptoms
• Bromocriptine (Parkinson’s, diabetes): Mania, anxiety, psychotic symptoms
• Clonidine (high blood pressure): Depression, mania, anxiety, psychotic symptoms
• Corticosteroids (asthma, lupus, arthritis, autoimmune diseases): Depression, mania, anxiety, psychotic symptoms
• Digoxin (cardiac diseases): Depression, mania, psychotic symptoms
• Interferon-α (various cancers, virus infections): Depression, mania, anxiety, psychotic symptoms
• Levodopa (parkinson’s disease): Depression, mania, anxiety, psychotic symptoms
• Lidocaine (treats irregular heartbeats, pain relief): Depression, mania, anxiety, psychotic symptoms
• Methyldopa (treats high blood pressure): Depression, anxiety, psychotic symptoms
• Metoclopramide (anti-nausea): Depression, mania, anxiety
• Opioids (pain relief): Depression, mania, anxiety, psychotic symptoms
• Prednisone (steroid, treats inflammation): Depression, mania, anxiety, psychotic symptoms
• Procainamide (treats heart rhythm problems): Depression, mania, anxiety, psychotic symptoms
• Quinidine (treats heart rhythm problems): Anxiety, psychotic symptoms
• Thiazide diuretics (decrease fluid accumulation, lowers blood pressure): Depression

It is always recommended to speak with your medical provider about what medications you’re on and what side effects you may be experiencing, and to consult with a medical provider about whether you should start or stop any medication.

Depression Is Treatable Even When Other Illnesses Are Present

Even when a person is faced with chronic illness, depression is treatable and symptoms can improve. The lack of energy, depressed mood, and feelings of hopelessness that come with depression will make coping with a chronic illness more difficult. These symptoms can be treated with therapy and medication, and even though it doesn’t cure the chronic illness, it can make it easier to deal with.

The Importance of Treating the Body & the Mind

The mind-body connection is inherent to the discussion around chronic illness and mental health. Pain and suffering are highly subjective to each person, and people can experience several types of pain, including physical, emotional, social, spiritual, and existential pain.

Some examples of mind-body therapies include mindfulness-based stress reduction (MBSR), cognitive behavioral therapy (CBT), meditation, and hypnosis. A 2019 study found that both MBSR and CBT significantly improved physical functioning and reduced pain intensity and depression in patients with chronic pain.¹¹

Another recent study found that mind-body therapies like meditation, hypnosis, relaxation, guided imagery, therapeutic suggestion, and cognitive behavioral therapy were associated with decreased pain and need for prescription opioids.(Fn12) Mindfulness and meditation are strategies that you can do on your own, whereas other options like CBT and hypnosis are best utilized with a licensed professional.

Therapy for Chronic Illness

If you have been feeling distressed for an extended period of time and it is impacting your ability to function, it may help to seek professional guidance. You can find a licensed therapist, social worker, other mental health professional, or physician for additional support. Working with an expert who has experience with individuals facing chronic illness may provide you with immense relief.

Getting Help for Chronic Illness & Mental Health

If you are facing mental health issues as well as a chronic illness, taking care of your mental health will allow you more enjoyment in life and will help you follow through with your medical care. This could include therapy, medication, and having a good support system.

Here are some ideas for where to get extra support when dealing with chronic illness:

• Finding a therapist: Look for a therapist who is experienced in working with people with chronic illness. You may want to seek out teletherapy or other accommodations for days when you aren’t able to attend in person.
• Talking to your primary care doctor about your mental health concerns: Your primary care doctor will discuss your mental health symptoms with you and help you come up with a plan. They can provide you with a referral to a psychiatrist and may be able to prescribe medication for you depending on your needs.
• Being more open with your friends and family about what you’re experiencing: Share what you are going through openly and honestly with the people who care about you. Not only will it help them be more understanding when you are having a bad day, but it can help you feel less alone.
• Finding a support group of people with similar concerns: Talking with others who are facing the same challenges as you can be incredibly helpful. Not only do they understand the specific issues you deal with every day, it’s also a way for people to share tips, coping skills, and tools they have learned.

Barriers to Mental Health Treatment for Those With Chronic Illness

Arzt states, “The first barrier is recognizing that the mental health issues are occurring. The person living with the chronic illness and/or family members must feel comfortable talking about it with their healthcare provider. Stigma and fear about mental illness can stop people from sharing their and their family’s concerns. Health care providers do not always ask about these symptoms as much as they ask about more physical symptoms, and when they do, they are often undertreated.

The lack of accessible mental health care professionals is perhaps one of the greatest barriers. The accessibility barrier can be geographic, financial (including lack of insurance coverage), lack of disability access at the provider’s office, or finding providers who understand the specific relationship of the chronic illness to the mental health issues presented.”

Fortunately, therapists have now widely adopted teletherapy (video-based therapy). Both in-person and online therapy have been shown to be effective. Online therapy has made quality mental healthcare more accessible and convenient for everyone, including those living with a chronic illness.

Living With Chronic Illness

Figuring out how to cope with chronic illness can be stressful, but there are many things you can do that can help. When someone believes that changes are manageable and is confident in their ability to maintain control over their future, stress is less pronounced.² That’s easier said than done! However, over time, identifying specific coping strategies that work for you can help you to regain a sense of balance.

Arzt suggests, “Seeking out ways to remain connected to others through support or social groups, finding passions that can be fulfilled even with the challenges of the illness and even more importantly can be shared with others, are vital to maintaining a sense of purpose and connection with the world. Seeking professional help when the mental health issues arise can be equally important.”

Here are six tips for coping with chronic illness and mental health:

1. Use Active Coping Strategies

Getting diagnosed with a chronic disease can be scary, and the idea of facing the illness head on may feel intimidating. Studies have found that those who confront their diagnosis and utilize problem-focused coping strategies are likely to be more well-adjusted and feel more life satisfaction compared to those who avoided their diagnosis.¹³ Examples of active, problem-focused coping include seeking out appropriate levels of information about your illness, preparing questions for your care team to bring to your appointments, and advocating for your needs. These strategies can allow you to feel empowered and regain a sense of control.

2. Seek Social Support

Chronic illness can feel isolating and overwhelming. Social support has been associated with positive adjustment to illness.¹⁴ Identifying your support system and reaching out for help can take away some of the burden of chronic disease. For example, asking someone to attend an appointment with you, to pick up groceries, or to be a listening presence can be very helpful and provide you with relief.

Many times, people want to be helpful but aren’t sure how to engage, or don’t know what would be respectful—by asking for specific tasks, you increase the likelihood of a mutually satisfying experience. Joining a support group specific to your diagnosis can also help to validate your experience and give you a sense of community of people going through a similar experience.

3. Find Ways to Make Meaning Out of Your Situation

When faced with a chronic condition, it is common for a person to question why this has happened to them. Several studies have reflected that a person’s ability to successfully make meaning out of their illness is strongly related to positive adjustment and increases in self-esteem.¹⁴ To attribute meaning to illness is a deeply personal journey and may take time; it doesn’t mean there has to be a bigger reason for what you’re going through, but that a reason you create from it can be powerful. It can be useful to process this by utilizing other coping strategies such as mindfulness and meditation, seeking social support, or professional guidance.

4. Practice Self-Compassion

When our health is compromised, it can feel as though our bodies are betraying us. This can lead to self-blame, however, blaming yourself will likely lead to further suffering. Self-compassion is strongly associated with emotional resilience and decreased levels of depression and anxiety.¹⁵

One way to conceptualize self-compassion is to consider how you would respond to a loved one going through a similar situation. What would you say to them? At times, we can be much harsher on ourselves than we are to those for whom we care deeply. If you are able to grant that same compassion you give so easily to others to yourself, it may help your ability to cope.

5. Apply Radical Acceptance to Your Situation

Sometimes, chronic illness leads to suffering that cannot be relieved through medical means, and this can be incredibly frustrating. It is a natural response to want to try and control a situation that you cannot change. However, fighting physical and emotional distress may lead to more suffering.

Radical acceptance describes the observation of our experiences without attempts of modification, allowing for more flexible responses.¹⁶ Radically accepting the situation or experience does not mean you like your illness or stop trying to treat it, but it does allow you to stop ruminating on what is out of your control, may provide you with some relief, and allows room to focus on what you can control.

6. Practice Mindfulness & Meditation

Mindfulness and meditation have been proven to improve symptoms in those experiencing chronic illness, as well as reducing stress for the general population.^11,12,17 The practice of mindfulness involves observing your thoughts without judgment. Bringing awareness to your thoughts with a sense of curiosity can grant you insight to your inner self.

One common way to practice mindfulness is through meditation practice. Many meditation practices involve sitting quietly, focusing on your breath, and observing thoughts as they come up. While it may not be obvious how this would help, numerous studies actually support its efficacy. There are several online resources for mindfulness meditation, including guided meditation videos and meditation apps.

Statistics on Mental Health & Chronic Illness

Here are several statistics on mental health and chronic illness:

• About one in five U.S. adults live with a mental illness (51.5 million people in 2019)¹⁸
• Six in ten adults in the U.S. have a chronic disease, and four in ten adults have two or more¹⁹
• Individuals with depression have a 40% higher risk of developing cardiovascular and metabolic diseases than the general population¹⁸
• One in four people with cancer have clinical depression³
• People with diabetes are 2-3 times more likely to have depression than people without diabetes and 20% more likely than those without diabetes to have anxiety⁴
• About 50% of individuals with MS have depression and about 50% have anxiety⁷

Final Thoughts on Dealing With Chronic Illness & Mental Health Concerns

Chronic illness may bring significant change to a person’s life, and with those changes can come distress. With the interconnectedness of mental and physical health, chronic disease may also negatively impact a person’s mental well-being. Thankfully, there are several strategies and resources to help you cope. Remember, you are not alone in this, and reaching out to a trusted friend, family member, or licensed professional is a great place to start.