How Chronic Illness Impacts Mental Health
Written by Madisen Schillo, MA, CMHC- therapist at Minnesota Attachment Collective
Hey, I’m Maddie! I am a Clinical Mental Health Counselor that is passionate about helping my clients live a healthier and more fulfilling life inside and outside of the therapeutic relationship. It is my belief that our mental and physical health are intertwined in an elaborate and complicated web that can leave us all feeling drained and occasionally confused. Speaking from experience, navigating mental health while suffering with chronic illness can increase this intricate correlation.
What is a chronic illness?
According to the CDC, chronic illnesses are broadly defined as conditions that last one year or more and require ongoing medical attention and/or limit activities of daily living.
Common types of chronic pain or illness include low back pain, cancer, arthritis, fibromyalgia, diabetes, heart disease, Lou Gehrig's disease, Alzheimer's disease and dementia, and many others.
According to a 2020 report by the CDC, 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.
The challenge of a work/life balance with chronic illness and the need for acceptance
Living with a chronic illness and trying to keep a "healthy" work/life balance can be tricky. The first step is acceptance. People suffering from chronic illness need to accommodate their chronic health conditions in their professional life, and deal with how their condition can impact the ‘always-on’ culture that we, as a society, feel inclined to participate in.
Acceptance with chronic illness means accepting that you have a new way of living. Some of your symptoms are not going to go away and are something that cannot be cured. That can be hard in in a world where someone is always trying to sell you a new miracle cure.
Acceptance means making small changes and accommodations to avoid burnout, and to start recognizing triggers. A huge part of this acceptance could be acknowledging that you might need more help than before and being okay with asking for support. Acceptance is also recognizing your limits. Prioritizing and careful planning to focus on things that bring the most benefit is crucial.
The focus should be on setting strong boundaries and sticking to them. You are allowed to find your own way to work, rather than conforming to the template society has imposed upon us. You don’t have to work 9–5; you don’t have to sacrifice your humanity to make money; your productivity does not define your worth.
Health always comes first, without any compromise. Our tendency is often to just power through, but the repercussions can set us back by a few days if we’re not careful. There is no ‘one-size-fits-all’ template to living and working with a chronic health condition. We must find what works for us.
How does having a chronic illness affect mental health?
Research shows that living with a chronic illness or chronic pain can increase a persons risk for mental health disorders such as depression, anxiety, post-traumatic stress disorder, suicidal ideation and grief.
Individuals with chronic health conditions, that took the Mental Health America screening in 2022, were at a higher risk for a mental health condition. This includes 79% of people that struggle with chronic pain, 75% of those with heart disease and 73% of people with cancer.
Those of us who struggle with chronic illness may also struggle with fatigue, stomach issues, sleep problems, and panic attacks. Often times we only come to counseling when the pain is disrupting our lives so much that we feel as if things are "falling apart."
Everyday we are reminded of a condition we did not ask for and that was not necessarily our fault. No matter the cause, our illness is making it much more difficult to be the person we want to be and live the life we have always envisioned.
Clients often come to therapy after dealing with a chronic illness 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. Chronic illness can often feel more like an isolated journey.
Those of us who had chronic illness may have to take more sick leave from work or even change jobs out of concern that we are burnt out and increased stress may be the cause for of our illness. 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.
Invalidation and trauma are common for those experiencing a chronic illness
Often times, individuals have been struggling with a chronic condition since childhood without ever having a medical diagnosis or clear understanding of what kind of health issue they are dealing with or its origin.
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. This leaves clients feeling worried and concerned about having to convince medical professionals that they have a condition that needs immediate attention.
Those who do receive a medical diagnosis face another challenge: coming to terms with a life-altering condition. Diagnosis can be scary because it could be something that does not have a cure and it can change how they live for the rest of their lives. Clients will have to deal with persistent suffering which can make it harder to live the type of life they want and, a medical diagnosis can cause clients to question their own mortality. The focus is often on managing their health and client may pretend they are feeling "okay" for those around them.
Chronic conditions can affect every aspect of a client's life such as work, school, family, friends, recreational activities, and even their own self-image. 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. It can also lead to relationship problems. The ability to be physically mobile and connect emotionally with other people in meaningful ways can fluctuate day to day depending on the symptoms they are experiencing at that time. Physical pain and depression related to chronic illness can cause clients to feel less sexually active and less inclined to sleep and eat regularly.
What are some ways that you can support your mental health when you have a chronic illness?
Join a support group
Joining a support group like those run by Mended Hearts can help you connect with others who are living with chronic illnesses. Relating to those who have similar challenges helps alleviate feelings of isolation. Fellow members can help each other by sharing recipes or schedule management tips.
Get Moving
Exercise releases brain chemicals to help you feel better, and regular fitness can help you gain confidence in your skills and strength. Moving your body through exercise is a great way to focus your mind on something other than negative thoughts associated with your chronic illness. Physical fitness can also help ease the physical and psychological effects of chronic illness.
Always consult your medical team to create a healthy exercise plan. You should also check with your doctor before making any changes to your fitness routine. Whether it’s taking a yoga class or choosing the stairs over the elevator, your exercise self-care should be personalized to your needs and lifestyle. You may want to join a fitness group or class to keep you accountable and help encourage you in your self-care journey. You might even make a new friend or two while you’re there.Doctors appointments can be a huge stressor for clients with chronic illnesses.
Eat Heart-Healthy
If you’re living with heart disease, you’re likely familiar with the components of a heart-healthy diet. Fortunately, many of the same foods are recommended by researchers to combat depression. If you’re following a heart-healthy diet, pat yourself on the back — you already have a self-care success story!
If you’re still working out how to manage heart-healthy eating habits, try one new food or healthy recipe each week or day. Small changes will eventually add up over time. Remember to check with your dietician and health care team before making any changes to your diet. 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.
Address sources of stress
Stress can negatively impact chronic illness and mental health. Identifying stress triggers is a great start to reducing the amount of stress you experience. If you can’t remove or avoid stress triggers, try to reduce the effects of stress by:
Practicing mindful breathing/meditation
Making a list of tasks to check off when you’re feeling overwhelmed
Asking a trusted friend or relative for help with meals or childcare
Asking someone to attend appointments with you (in person or via video chat) to take notes and ask questions
Eliminating or reducing any unnecessary commitments that add stress
Keeping a list of positive thoughts or gratitude language
Get plenty of sleep
Getting enough sleep helps with mental clarity and mood. It’s also a time your body uses for self-repair. Lack of adequate sleep can make it more difficult to deal with stressors in a healthy way. Consistent lack of sleep can be hard on your heart as well. Here are a few ways to make sure good sleep is a part of your self-care routine:
Try to go to sleep around the same time every night
Avoid blue light or bright light close to bedtimes (like phones, tablets and TV)
Keep your sleep environment dark and free from extra noise
Avoid eating or drinking right before bedtime
Try reading or deep breathing in bed if you’re having difficulty settling down
Do what you enjoy
Self care can include learning new things or practicing new skills that make you happy. Play an instrument, create art, or write your memoir. Maybe you like to attend local car shows or concerts in your community. You may want to take time each day to read your favorite book or visit with a friend. If you don't enjoy activities or hobbies like you used to, that is a good indication to reach out to a therapist in your area or your health care team to address these changes.
Laugh
Did you know there are health benefits to laughing? Laughing can help decrease stress and increase oxygen flow to your body.It’s also a lot of fun to do! If your life is feeling heavy with the weight of chronic illness, grab a joke book, watch a funny movie or find a joke of the day. Grab a friend, neighbor or stranger and laugh together
Talk to a professional
Talk therapy is an excellent way to work through depression. Treating anxiety and depression with therapy can help patients with chronic illnesses improve mental health outcomes. Ask your medical team for a referral to a therapist or psychologist. You may even be able to meet with your mental health professional over video chat or telehealth.
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. This is a form of medical gaslighting that makes navigating the health care system a scary endeavor for clients. Because of this, allow yourself to be picky when selecting a therapist. Working with a provider who specializes in chronic illness and who you feel comfortable with can make all the difference!
Individuals with chronic health conditions often face uncertainty and psychological distress, which is why validation and emotional regulation are crucial in learning to cope and live productive lives. In connection to mental health counseling, the main goal when working through chronic illness and mental health symptoms is to focus on returning to living a meaningful life with pain or illness as well as the uncertainty that can go along with it.
Important Things to Look for in Therapy for Chronic Illness
While therapy can be a great tool for navigating life with chronic illness, it’s important to work with a therapist who knows how to support you. There are a number of different things that a therapist may specialize in, so looking for a therapist who specializes or has experience in chronic illness will be a good place to start. But, what else might you want to look for in therapy?
Mindfulness and ACT
Mindfulness-based therapeutic practices and acceptance and commitment therapy (ACT) can help individuals living with chronic pain or illness gain an awareness of the thoughts, emotions and bodily responses that can be part of their condition or the result of additional life stressors.
One significant way that mindfulness and ACT techniques can be helpful for navigating chronic illness is supporting who may feel anxious or nervous about going to the doctor for an appointments. These techniques can help one to gently observe their thoughts, emotions, and body sensations that may come up. Potential questions a therapist may utilize would be:
What worries come to mind when you think about the appointment?
How do these worries show up in your body?
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?
Preparing a plan that includes what to do the night before, the day of, during and after the appointment can help to alleviate stress and anxiety.
Mindfulness practices can be an important part of therapy for anyone. Deep breathing exercises and body scans can help calm down the nervous system. These are great tools for all, and if you are living with chronic illness, these can help you feel more confident in advocating for yourself as you navigate work life and the health care system.
Dialectical Behavioral Therapy
When it comes to how trained counselors can aid in the process of living with a chronic illness, Dialectical Behavioral Therapy (DBT) is an approach that is useful in aiding clients to develop emotional regulation skills.
Check the Facts is a DBT skill that helps clients notice and evaluate their emotional response to a situation. This exercise consists of six reflective questions to 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.
It also helps clients recognize when their response is ineffective in helping them navigate the situation. Sometime's a clients emotion may fit the situation, but the intensity of the emotion may be out of balance. Anxiety can be helpful for people living with chronic illness, the key is to realize when the response becomes problematic.
Clients run into problems with their emotions when they try to avoid feeling the emotion all together or when the intensity of the emotion is driven by other factors such as genetics, beliefs, or thought distortions. This can lead to a disproportionate or ineffective response.
Working with a therapist who utilizes some emotion regulation skills such as Check the Facts can help you to better understand your emotions and connect to skills to utilize emotions in a functional and adaptive way.
The Importance of Validation
Those with chronic illness and mental health symptoms can often feel alone and invalidated. It’s common to even experience medical trauma in the process of trying to find a diagnosis. This kind of trauma results from a series of stressful events that are related to a client's mental and physical health and make it difficult to feel safe in a medical environment.
In some cases, medical providers can be insensitive and write clients off as people who are seeking drugs or being dramatic. Some client's can even be told their chronic illness is "all in their head."
Seeking a medical answer for the cause or to alleviate suffering can mean invasive procedures or surgeries that do not always pay off or may lead to further and more intense complications.
The persistent invalidation of ones lived experience and invasive exploration of their body can result in medical trauma for some clients. This can lead those who live with chronic illness to show signs of post-traumatic stress disorder. Because of this, it is understandable to want to avoid medical appointments, be hesitant in talking about health issues, or feeling mistrust of medical providers.
Medical trauma and gaslighting can lead to heightened chronic health symptoms and even a decline in a one's overall physical and mental health if they do not get the support that they need.
What is most helpful for people living with a chronic illness and mental health condition is to work with a clinician who validates their lived experience and helps them advocate for their own well-being. When seeking a therapist for chronic illness, looking for a therapist who names validation as a strong skill of theirs, or even seeing how you feel with them on a free initial consultation can be helpful!
Watch out for Implicit Bias
Counselors can assess for chronic ailments during the intake process by asking about the client's health history, using a checklist of physical health conditions or physical health symptoms such as pain, fatigue, and dizziness. It is important that clinicians ask about the presence of chronic illness and disabilities but not to assume that chronic conditions are a "problem" or presenting concern.
When starting off with a therapist, you may even ask them about their thoughts on the associations of chronic illness and mental health. Their response may give you an idea on how they perceive this connection as well as if they have any implicit bias present.
Counselors should be aware of their own implicit bias before working with this population. One resource for therapists is to utilize is the Implicit Association Test, which measures the strength of associations between concepts and evaluations or stereotypes to reveal an individual's hidden or subconscious biases.
Are you ready to seek support for your chronic illness?
Shared experiences connect us as human beings and as a society. Although there can be shame and embarrassment surrounding your diagnosis, whether that is a mental health disorder or chronic illness, sharing your personal experience can do a lot of good.
As someone who suffers from a chronic health condition and is in the mental health field, I am able to understand and validate my clients lived experiences. Chronic illnesses can be isolating- and connecting with others who understand what you are going through can be healing and therapeutic. You never know the difference you can make in someones life, just be being uniquely you.
If you live in Minnesota and would be interested in working together, you can learn more about me here! For more info on our therapy services, click here.
