Earn your rest. Earn self-care. Earn taking care of yourself. The list is endless for the unrealistic standards forced on us by society. The United States is driven by an obsession with productivity levels. Taking days off is portrayed as weak, a lack of trying, and laziness. Where is the balance? And where do those with CF fit in when struggling every day to keep up with everyone else?
Before my double-lung transplant, I worked full-time as a mental health counselor. I graduated high school, went to college for six years, and earned two degrees because I thought that’s what I was supposed to do. My health took a back seat and was never the first priority. I wanted so desperately to be like everybody else that I neglected the parts of me that needed extra attention.
Of course I did what I “needed” to do — the basic requirements of living life with chronic illness. I never skipped a treatment, always remembered medications, and went to all my doctor visits. I was the poster child for compliance, doing exactly what I was told would sustain my life … or so I thought.
Back in my earlier days, those with CF weren’t taught about many residual effects caused by CF that needed attention. The lack of essential rest was one of them. As we know, rest is so much more than just sleeping. Resting is a difficult feat because we can’t take a day off from CF or transplant life. We are constantly “on” and don’t have the luxury of taking a break from doing what we need to survive, from making literal life or death choices. Failure to take our meds, do our treatments, or take care of ourselves compromises our health.
CF and transplant are exhausting in and of themselves. The medications cause fatigue. We are extremely traumatized by how our bodies have been torn apart and put back together again. Dealing with chronic illness is a constant mental health battle. Keeping up with phone calls to multiple doctors’ offices and insurance companies to coordinate care is taxing on all levels. Resting our bodies, minds, and souls is essential for overall wellness.
There’s an underlying sense of shame around resting. The status quo is checking off your to-do list before you’re “allowed” to take it easy. We measure one another’s contribution to this world by productivity level. This thought process has proven detrimental to the majority of the population, as evidenced by the growing number of stress-related diseases and acute health crises. This stems from a lack of rest. We’re caught in a vicious cycle of trying to keep up, always falling behind, and punishing ourselves by pushing beyond our energy capacities all for the sake of how we look to everyone else.
Those with chronic illness often feel we have to justify how we spend our time because not all of us can work at the same capacity. It seems we are held to the same standard as those without health complications. Especially in the case of invisible illness: because we look “fine,” we “should” be able to function fine, too.
It seems the rest of the population is “allowed” to take vacations and do whatever they want to on their days off. The expectation for those of us with chronic illness is that our vacation days “should” be used for doctors’ appointments, hospitalizations, and surgeries. The disparities are vast given how different these two scenarios are. Our “vacations” are never restful.
I’ve learned other methods of what rest can look like while struggling health-wise. For me, it’s taking days at a slower pace. It’s writing achievable goals … for now. It’s giving myself permission to have days where all I can manage to accomplish is to take care of my health needs. My guilt has been alleviated by giving myself grace for what I’m unable to do compared to others. My shame is eradicated by celebrating that I’m still alive to discuss this issue. It’s been important for me to remind myself of how far I have come, what I’ve conquered, and the struggles I still deal with on a daily basis. These matters just mean that I function differently, not that I function less than anybody else.
I hope all people with CF take a step back and recognize that we don’t have to justify our lives to anyone, nor does anybody else owe us an explanation for rest needs. This grants us the space to be ourselves and it also cultivates acceptance of each other’s processes.
In case you need to hear it: I give you permission to rest, free from guilt, shame, or comparison. Know this truth: you are not less worthy because you require more rest.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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