As much as we resist the idea, cystic fibrosis can become a defining part of identity; a lifestyle that we’re forced without choice to live day in and day out. A choice exists, I presume; we have the choice to take care of ourselves, to take our medications, to do our treatments — but that’s far more of a devil’s bargain. Any sort of time or quality of life benefit that we may get from forgoing our daily treatments leads to chest discomfort, a digestive issue, or an exacerbation.
For adults, the rationale is obvious: We do our treatments so that we can go about our lives, whether it’s attending college, going to work, taking care of family, socializing with friends, or any other part of adult life. For kids, the realization is harder to see: Young bodies are more resilient, less likely to get sick, and more likely to bounce back after an infection or ailment.
It does not matter which way you spin things — children and adults with chronic diseases have to first and foremost want to take care of themselves. It isn’t always fun. Teaching compliance and adherence are difficult endeavors. I speak from personal experiences. My sister Alyssa struggled with compliance, sometimes unable to see the benefit of treatments because she was sick so often. I haven’t had as much of a struggle with compliance, but I’ve been healthy and respond very well to preventive therapies whenever I go on any sort of new treatment plan. It’s easy for me. I’m not sure it’d be so easy if I didn’t bounce back so often.
I’m not a provider or caregiver, but I have lived through chronic disease from childhood to adulthood and have become my own primary caretaker while living alone for most of the previous six years. I often wonder what my parents did to instill the work ethic that fuels my compliance, and if they did something different with my sister. My sister was five and a half years older than me. Our age gap can explain some differences in medication, guidelines, and other changes that occur over the years, but it’s hard to know if her sharper disease progression is explainable by only that, compliance issues, the widely varying world of genetic modifiers, or (most likely) a combination of all the above.
I have a biochemistry degree. My line of thinking when I chose that as my major was that if I understood CF as a disease and the science for treatments and medications, I would be more inclined to take care of myself and accept the likely decline that comes with age. I think I was correct, but I don’t think that’s the only, or even best, way to encourage disciplined compliance.
I believe that finding a way to view our treatments with the sheen of something we enjoy, as opposed to the stain of bitterness, is the best way to encourage adherence. There are times when treatments are an overwhelming burden. It’s hard to neglect the mental health burden that comes with knowing our treatments may be holding us on by a thread before an exacerbation. Fear may be a decent acute motivator, but I don’t believe it’s sustainable. Fear engenders anger and bitterness, which perpetuates mental health issues that come with the territory of chronic disease.
Treating our treatments as a part of our healthcare regimens that keep us healthy, as opposed to the singular reason we’re staying healthy, is the path to confident, sustainable, and enjoyable compliance. After all, mental health, exercise, good fortune, and other healthy habits play into our resilience and longevity as well. We shouldn’t encourage people, especially children, to miss or skip treatments if it’s preventable. Life gets in the way sometimes, and ensuring that we’re accepting and cognizant of the importance of treatments without habitually missing them is a better route to compliance and self-care.
Your health does not define you as a person, nor does your compliance. Life is hard; life with a chronic disease is harder. Finding the small ways to navigate and simplify life is the key to better health.
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.