Self-care isn’t self-indulgent. It’s about being self-aware and recognizing your own needs, a healthy practice for people who live with rare diseases and chronic conditions.
“Self-care can help patients with long-term illness maintain a level of consistency and wellness they wouldn't otherwise get with medications alone,” said Amy Orr, the author of Taming Chronic Pain and someone who lives with chronic illness herself.
Conversely, self-neglect can contribute to increased symptoms, stress and flare ups. Resiliency and mental health decline.
Self-care sounds simple enough. Eat nutritious foods. Get a good night’s sleep. Put in some exercise. Enjoy time with friends and relatives. You don’t have to spend lots of money on bubble bath, spa days and exotic vacations.
Aidan Walsh, a college freshman who has a primary immunodeficiency, recommends setting limits and taking breaks.
“Sometimes I just need a day of rest,” he said.
So why doesn’t everybody practice self-care?
“There are many reasons why people with chronic illness will neglect self-care, from feeling as though they simply don’t have the energy to engage in the exercises to feeling undeserving or helpless to create a positive impact on their physiological and/or emotional well-being,” said Dr. Felecia Sumner, a family medicine doctor in suburban Philadelphia and the author of Fill Your Cup: A Physician's Guide to Caring for Yourself, Creating Your Purpose, and Masterfully Managing Your Condition.
For people with chronic illnesses, self-care begins with an attitude adjustment. Don’t focus on struggling with disease. Think about ways to make life more enjoyable.
“When we are operating in survival mode there is no awareness of our overarching quality of life because the brain only cares about keeping us alive,” Dr. Sumner said. “Accessing small ways to bring self-care into the focus will calm the survival brain so we can begin to build a healthy relationship with ourselves.”
A good place to start is establishing a daily bedtime to ensure you get the rest you need to take on the day. Dr. Sumner suggests 10 p.m., when the body’s levels of cortisol, the hormone associated with stress, are at their lowest.
Friendship and social interaction also enhance well-being, she said. Think of the outdoors as a happy place and find joy in a connection with nature. Above all, listen carefully to your body.
“For people with hemophilia, for example, self-care involves paying close attention to what your body is telling you,” she said. “Don’t ignore joint pain.”
Caregivers also should practice self-care. You can’t take care of others if you don’t care for yourself. And eating well, exercising and safeguarding sleep helps to bolster an environment in which self-care is a priority for everyone.
Hemaware.com, a website from the National Hemophilia Foundation, recently interviewed Cazandra Campos-MacDonald who said caring for two sons who have hemophilia always took priority. For too long, she did not manage her depression, she said.
“I finally gave myself permission to put myself first. For so many years, I was at the bottom of the list,” Campos-MacDonald told Hemaware.
A daily gratitude exercise—voicing three things to be grateful for each morning—can reduce stress and enhance the effect of dopamine and serotonin, chemical messengers sometimes referred to as “happy hormones,” said Kate Truitt, Ph.D, a licensed clinical psychologist in Pasadena, California. Don’t forget the simple gifts of life: a child’s smile, the scent of morning coffee, the sparkle of sunlight on a beautiful day.
“Gratitude exercises also will disrupt cycling thoughts of depression and anxiety and enhance mindfulness and connection to the world,” she said.
Achieving consistent self-care is a journey. It doesn’t happen overnight, so don’t be too hard on yourself if you stay up late or take a second helping at dinner.
“The day-to-day grind of always taking the best possible care of yourself, and putting your physical health first, wears even the most diligent patient down, and lapses are inevitable,” Orr said. Forgive yourself and move on.