by Debra Rafson
I have been managing chronic illness for nearly twenty years. Heart disease, autoimmune conditions, Lyme Disease, and the onset of disability have dramatically changed the trajectory of every aspect of my adult life. As such, I’ve become adept at juggling appointment scheduling, medications, symptom management, physical therapy, and insurance issues, right alongside the rest of my daily responsibilities.
That being said, it should come as no surprise that this balancing act I engage in has taken a toll on my mental health. No one ever teaches us how to be sick, especially chronically so. In fact, we are rarely given the tools in school or by our families to navigate through the physical, financial, social, and emotional ramifications of illness or disability.
Being “sick” is expensive. It is time-consuming. There is an isolation to illness. Sometimes, people don’t believe you or think you are exaggerating. And you may not be able to physically do what you used to, meaning modifications may be necessary in your job and your activities. That was the case for me.
There are some sobering statistics about the strong connection between chronic illness and mental health:
- “Research has shown that people with chronic illnesses are 2 to 3 times more likely to experience depression than those without such conditions. A study published in the American Journal of Psychiatry found that 40-50% of individuals with chronic illnesses like diabetes or heart disease also meet the diagnostic criteria for depression.”i
- “A significant proportion of individuals with chronic conditions, particularly those with conditions like asthma, cancer, or chronic pain, experience high levels of anxiety. According to the National Institutes of Health (NIH), approximately 40-60% of people with chronic conditions also report symptoms of anxiety.”ii
- “Receiving a diagnosis of a chronic illness can be life-altering. Along with the day-to-day physical symptoms of the illness, emotions such as sadness, grief, and denial, as well as an added financial burden, can follow a diagnosis.”iii
I have experienced both depression and anxiety because of chronic illness, as well as a serious bout with Post-Traumatic Stress Disorder (PTSD) resulting from open-heart surgery. Yet, over time, I have found a number of ways to manage my mental health through my chronic illness journey.
Here are my top 8 tips:
- Find a Mental Health Therapist
- I have been seeing a therapist for more than 14 years. Depending on how I’m doing, we talk weekly or bi-weekly. I sought out an additional therapist who specialized in PTSD to get me through that especially challenging time. I consider this an essential part of my healthcare maintenance routine.
- Seek Out a Peer Support Group
- I moderate an online peer support group for the Hypertrophic Cardiomyopathy Association (HCMA). As a person with that genetic heart disease, the group is as useful for me as it is for the attendees. I wrote about my experience with peer support groups and why they work so well in a recent issue of “What’s Her Problem?,” my weekly Substack newsletter tackling Issues at the Heart of Chronic Illness and Disability.
- Find a peer support group, in person or online, as specific to your illness as possible. Launch has some new offerings you should check out!
- Talk Openly with Your Family and Friends
- The only way your support system can know exactly what you’re going through is if you tell them. Not everyone will want to hear it, and not everyone will be able to handle it. You may lose some friends along the way, and you will have to learn how to let them go. But the best ones won’t just stay, they will step up. Surround yourself with the ones who can and do.
- Write About It
- In The Healing Power of Storytelling, Annie Brewster MD says “It is through our stories that we find meaning and, ideally, integrate challenging experiences into our identity, so that we can move forward with optimal health. It is in sharing our stories without apology that we come to accept ourselves fully, as we are, without shame. Sharing is vulnerable but also a path to empowerment.”iv
- Journaling is a popular and simple way to get started, and it’s something you can do in just a few minutes. Any kind of writing can help you process your feelings.
- Be Open to New Methods That May Improve Your Mental Health
- I find Acupuncture incredibly beneficial at calming and regulating my nervous system. You might also try meditation, yoga, breathwork, or tapping. Not everything will work for you, but try to find one thing that does.
- Just Put One Foot in Front of the Other
- If I look at the big picture, it can get overwhelming, but if I take one appointment at a time, one to-do list item at a time, I can get through most things.
- Rest When You Need To
- As a recovering workaholic, I struggle to take my own advice here. But try to ignore society’s need for you to be productive. It’s ok to rest. In fact, you may be even more productive if you do.
- Quality of Life
- It is worth devoting time to hobbies and interests that have nothing to do with your illness. Not only can they be a good distraction, but by finding activities that bring you joy, your overall mental health and quality of life are bound to improve. I watch tennis, listen to podcasts, study French and Spanish, play mahjongg, and do the word puzzles in The New York Times.
Managing mental health when you have chronic illness will always be a work in progress, but there are plenty of resources right at your fingertips.
iii https://publichealth.jhu.edu/2021/the-intersection-of-mental-health-and-chronic-disease 8/5/25
iv Annie Brewster, MD. (2022). The Healing Power of Storytelling. Berkeley, CA: North Atlantic Books.
