Whether you’ve been living with a chronic illness for some time, you’ve recently been diagnosed, you think you might have an undiagnosed chronic illness, or your friend or loved one is living with a chronic illness, you probably know that chronic illness has a huge impact on mental health.
One of the most important steps you can take to help you understand and deal with the far-ranging effects of chronic illness is to seek mental health support as soon as you can.
MyWellbeing therapist Kim Yancey specializes in working with people who have chronic illnesses and disabilities as well as caregivers of people living with chronic illness. Here, she shares some expert insight into how chronic illness affects our mental health and how therapy can help those living with chronic illness manage their conditions and support their wellbeing.
A chronic illness is one that lasts a long time, often for a year or more. People living with chronic illnesses may have a need for ongoing medical care and have difficulty doing the things they need to do every day. These behaviors, called activities of daily living, include things like using the toilet and getting dressed.
“For some people, chronic illness comes out of nowhere,” says Kim. “You could be fine one day and then the next day, you start falling or experiencing some other symptoms. For other people, the onset could be slower and sometimes individuals don’t realize something is wrong until they’ve been living with something for a long time.”
Mood disorders such as depression and anxiety are common in people with chronic conditions, because the onset of chronic illness is so life-changing and the adjustment to a new way of life can be very difficult.
When you have a temporary or acute illness, like the flu, you can expect to return to your normal life in a few days or weeks—but with chronic illness, it might never go away and it can disrupt your way of life.
“Prior to living with a chronic illness, some of my clients used to just be able to get up out of bed and go about their days,” says Kim. “After the onset of their illness, it can take them an hour to get out of bed, if they can get out of bed at all.”
While chronic illnesses will have their own illness-specific symptoms, there are other ways they can affect you—and those additional symptoms are often invisible, like pain and fatigue. That, in addition to the details of managing a chronic illness, not knowing what might happen in the future, and an impact on finances can cause a lot of stress.
Some stress symptoms include irritability and difficulty in relationships, disturbed sleep, cognitive issues, fatigue, aches and pains, sadness, and loss of interest in things you once enjoyed. Feeling stress for an extended period of time can in turn cause feelings of hopelessness, anger, or depression, which has many of its own symptoms, including physical ones.
Research suggests that people who have depression and another medical illness tend to have more severe symptoms of both illnesses, but there's hope—research has also shown that treating depression and chronic illness together can help people better manage both their depression and their chronic disease.
The loved ones or ones who live with or care for people with chronic illnesses might feel similarly stressed with the management and care of the illness and its symptoms.
“Finding out that your child has something like multiple sclerosis can change your whole world,” says Kim. “It can be devastating and incredibly hard to cope with. I work with a lot of parents who have children who have been diagnosed with chronic illnesses and sometimes, the parents stress the kids out!”
“Kids are resilient and parents sometimes don’t realize that they’re going to be as okay as you are," she says. "If you have ways to cope with the diagnosis and can mirror that for them, it’s so supportive. It can be incredibly hard, but try to keep treating them like a kid.”
“It depends,” says Kim. “Doctors have gotten better at laying out what options people might have for mental health care once they receive a chronic illness diagnosis. They might be able to share resources or connect people with a social worker.”
“The hard part is, once the doctor says, ‘You’ve been diagnosed with X,’ people don’t usually hear anything after that,” says Kim. “The news is so overwhelming that they hadn’t even had time to process and pay attention to what other information might be shared.”
“If you are living with a chronic illness and potentially also struggling with depression, having someone to work through that with you can help you in so many ways,” says Kim.
What sort of questions might your therapist ask in your first session?
“Right away, I want to know when someone was diagnosed with their chronic illness. That gives me insight as to next steps in their treatment. Is this new to them or have they been living with it for a while? Once we’ve established the timeframe, I like to know what support system the person already has in their life. Do they have family and friends supporting them? Who do they live with and who cares for them? Are they living with people who actually don’t support them? Just because they have someone else in the home doesn’t mean that they are receiving adequate care.”
“It’s always helpful for me to know the level of impact on their daily lives that their chronic illness has," says Kim. "What can they do by themselves? What do they need assistance with? Beyond treatment for depression or anxiety, they might be in need of other services I can connect them with.”
Your therapist can help you explore your feelings about your illness and your situation, help you develop coping skills so you can manage the physical and emotional impacts of your illness, work with you to examine your feelings and beliefs around chronic illness and how they affect your behavior and emotions, and help you learn to advocate for yourself. Your provider might also prescribe medication for things like depression and anxiety or refer you to someone who can.
“Anxiety is a big one for people living with chronic illness,” says Kim. “Their minds might race, thinking about what they’re going to do or how their illness might impact their future. They might worry about how they’re going to cope long-term.”
You and your therapist will design a treatment plan together, working collaboratively to meet you where you are and support your unique needs.
“A therapist will be able to help with your healing, help you learn how to cope, and help you learn how to live your life overall as you navigate through your diagnosis and beyond," says Kim.
There are a few ways to pursue therapy to help support you as you live with chronic illness, including individual therapy, support groups, and family therapy. If you also experience depression, treatments can include things like cognitive-behavioral therapy (CBT), interpersonal therapy (IPT), and problem-solving therapy.
In individual therapy, you’ll receive support in a one-on-one setting where you can share deeply personal thoughts and feelings in a safe and private space and receive personalized treatment.
In family therapy, you’ll also work with a therapist for personalized care, but directed toward the family members involved. As chronic illness can impact family members and caregivers of those with chronic illness, a therapist can help the family and caregivers cope and also work with them to learn how to best support the individual living with the chronic illness.
In support groups, you’ll receive support in a group setting with other people living with chronic illness, often those who are experiencing the same illness. While others will be present, it is still a safe space to share and you’ll be able to learn from one another, support each other, and create a sense of community.
“For people living with chronic illnesses and their caregivers, a combination of individual and group therapy can be incredibly beneficial to not only give you personal space and support, but a network of support around you,” says Kim.
“Journal!” says Kim. “It doesn’t have to be anything serious. Just a wellness journal for how they feel each day. Something like, ‘Today, I woke up and was able to get out of bed in fifteen minutes.’ This will help you see changes over time, if any. You can also track what you eat or what activities you engage in to see if anything impacts your symptoms for better or worse.”
“Being transparent about what’s going on with your medical providers and caregivers is also important,” says Kim. “Nothing is too insignificant to mention. A lot of research around these illnesses is ongoing, so any information you can share about your experience can help those caring for you to provide the best support possible.”
Nearly half of all Americans live with at least one chronic illness, so while your experience is life-altering, you are not alone. While living with chronic illness can be scary, isolating, exhausting, and demoralizing, there is hope.
“Having a chronic illness is stressful and life-changing and that’s valid,” says Kim. “It’s okay to get help; it’s okay to get individual therapy, group therapy, or a combination.”
Finding support is incredibly important when living with chronic illness—having friends, family, caregivers, medical professionals, and mental health care can help you not just cope, but thrive.
Caitlin is an organizational change strategist, advisor, writer, and the founder of Commcoterie, a change management communication consultancy. She helps leaders and the consultants who work with them communicate change for long-lasting impact. Caitlin is a frequent speaker, workshop facilitator, panelist, and podcast guest on topics such as organizational change, internal communication strategy, DEIBA, leadership and learning, management and coaching, women in the workplace, mental health and wellness at work, and company culture. Find out more, including how to work with her, at www.commcoterie.com.