Jodi Taub, a New York-based therapist, specializes in treating patients who have rare and chronic diseases. Taub, who lives with a primary immunodeficiency herself, speaks on the topic for patient advocacy organizations.
Living in a society that prioritizes multi-tasking and “taking on more” makes it challenging for people living with chronic illness to prioritize sleep and rest. Long work hours, and packed schedules leave even the healthiest among us feeling tired and burned out.
Self-care is often suggested, but is elaborate self-care the answer? For those managing chronic health care conditions and chronic fatigue, the assignment to practice self-care can feel like another “to do” – more time-consuming activities to add to the checklist. Instead of yoga class or a weekend getaways, sleep and rest often are what we need. If you live with a rare or chronic illness, you probably know that, at times, we simply do not have the choice to do anything else.
And yet we live with the constant pressure to be doing something. This pressure and judgment can come from a significant other or family member, a coworker or friend, who is able bodied and may not understand why sometimes you can do things, and at other times, you simply can’t. They may struggle to understand the instability and often unpredictability of chronic disease.
Manage your own expectations, too. Take stock of how much pressure you are heaping upon yourself. No one wants to feel unreliable, like a burden or a constant canceller. It’s no fun to miss out on joyful life events, recreational activities or daily tasks because of sleep and rest. Forget FOMO (fear of missing out) – those of us who are coping with chronic health care conditions live with MO (missing out).
But here’s why we should listen to our bodies and prioritize down time:
- Sleep regulates the immune system, metabolism and endocrine system. As a result, sleep and rest can improve our recovery time, which can decrease or prevent an exacerbation of symptoms. It allows us to refuel, to decrease burnout, to be more efficient and to be more present.
- Getting enough sleep and rest helps to better regulate mood and decrease depression. Reducing shame and judgment supports a clear mind, which can decrease both anxiety and depression.
If you want to commit to a better routine, add sleep and rest to your schedule. Block time for them, just as you would for other obligations on the calendar. This settles the matter and decreases ambivalence. No more tug of war deciding whether or not you should take a nap or soldier on with some other task when you are not up to.
Next, talk to others about why sleep and rest are important. Let them know you can’t always commit because you are protecting your health. Educate them about how the combination of chronic fatigue, too many life demands and health flares can lead to exhaustion. Ask for modifications such as a raincheck to an event. If someone is counting on you, suggest they have an alternative option if you can’t attend.
On the home front, let your partner or family know that you are prioritizing sleep and rest. That might mean you skip making dinner or reschedule a chore for another night of the week. If you live alone, give yourself the permission to fold your laundry on another night. Instead of making a complicated dinner, choose to take out, heat up leftovers, or make an easy recipe.
Setting reasonable expectations can help decrease feelings of disappointment. Then it will be no surprise when you need to slow things down and let your body rest. We usually think of setting expectations as something we do for others, but in this case, we do it for ourselves, too.
For more reading on this subject, here are some resources I consulted:
Metabolic, endocrine, and immune consequences of sleep deprivation
Association of sleep disturbance with chronic diseases in the European perspective
