Hope: A Strategy for Managing Chronic Disease–Experts by Experience
Time is one of the most priceless gifts we all have, but which can be robbed in an instant from those of us with chronic illness and disease.
From diagnosis and prognosis, to the time it takes to cope with symptoms, we are instantly required to shift our thinking to managing our time. Our priorities shift. Often, that shift is in favor of time needed to dose, adjust, rest, visit the doctor, get new labs drawn, or try a new gadget—all so that we can keep breathing.
These demands can cause an overload of information, and patients oftentimes find themselves fatigued from decision-making.
I had to walk away from my computer while writing this story because my vision started blurring. The reason for this—the continuous glucose meter, which helps keep my blood sugars in range, stopped working unexpectedly, and my blood sugar began drifting downward—but I didn’t notice until it was too late!
Now, I’m back.
By the way, three hours to troubleshoot a sensor that is supposed to help me make decisions to manage my symptoms every second of every day is ridiculous! See, it’s all about time.
Let’s consider our roles within the space of healthcare.
Are you a physician?
Have you asked yourself how you can meet patients’ needs, or where they are in their journey and use that knowledge to save time and add value to their lives?
Do you work for a health insurance company?
Have you asked how you could advocate for patients who need prescription drug refills that may require prior authorization or step-therapy for coverage? (Hint: Usually this means many hours on the phone and delays in delivery for patients to get the medicines…more time spent that they can’t get back.)
Do you work in healthcare administration?
Have you looked into mobile or technology solutions to streamline clinical access for those patients who need to see specialists frequently—to help save patients time?
Are you a researcher who conducts clinical trials?
Have you considered adjusting the protocols you are working on, to allow for patients to have some time back; have you asked them how you can help?
Do you work for a pharmaceutical or device company that is planning to, or has commercialized a treatment?
Have you involved patients in the clinical development process, or in launch strategy-planning to see how you might add value to their lives and align to your business strategy at the same time?
For many patients, especially young adults, the time that is lost can exacerbate anxiety and stress—factors that are considered co-morbidities of many rare and chronic diseases.
How do we combat all this?
With hope—when patients focus on the possibilities of what can be accomplished despite everything, rather than focus on the issues they face.
When diseases, symptoms, management are framed as problems, our feelings of fear, doubt, and worry increase. On the other hand, when the same issues are presented as opportunities or possibilities, our energy escalates and hope becomes the primary driver.
So, my challenge is for all of us to start asking the “What if?” questions.
What if all of these things are working together for a greater good? What if all of the bad things that have happened are actually leading towards better potentials?
Disease is a misfortune, yes. It could also be an opportunity when viewed from the lens of hope. And with hope, there is faith which does for us what we often cannot do for ourselves—it gives instead of takes.
Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.
About the author: Kristina (Wolfe) Figueroa, MSPH, is a hopeful storyteller, Type I Diabetes (T1D) patient, advocate and motivated young healthcare professional. She began her career in clinical research operations before moving into business development. She has successfully developed opportunities to innovate within clinical trials by raising patient voices and drive messaging with biopharma companies and investigators. Find her on Twitter at @tunaturns.