What does the term ‘wellness’ mean if you’re a patient with a very rare disease or chronic illness? At its simplest level, some in the general public may think of heath as the absence of illness and wellness as choices made in the process of living a healthier life. Many more would define wellness as seeking a balanced life in a mind, body, and spirit. But how do those living with a chronic illness or rare disease define wellness? Here are some views from the atypical HUS (aHUS) community.
“Wellness is being able to get out of bed and enjoy life with friends and family.” (TP) If physical health is a key dimension of wellness, people with a chronic illness or rare disease seem to have a marked disadvantage. Having a positive attitude and flexible approach to life plays a vital role, as we acknowledge that particular events or issues with our health status call for creative thinking to accommodate desired plans. Challenges may arise as a one-time event, but they also might pose ongoing issues with medical treatments may interfere, dialysis schedules that might be disruptive, or symptoms invisible to others but which are felt all too keenly by the person with medical issues. Chronic illness doesn’t “go away”, so one step toward wellness is to take an early stance and actively choose to adjust lifestyles and options to create a meaningful, happy life.
“Wellness to me means being able to be the wife and mother my family need me to be!” (LH) Rare disease doesn’t affect just the ‘patient’, it touches all relationships and areas of life. Having a chronic illness doesn’t mean sitting on the bench, watching the game. Some days will be easier than others, some days will prove frustrating and still others will be filled with distress or fearfulness . Whether it’s with friends, family, or your faith circle, spiritual and emotional needs exist. Recognize them, address them, nuture them – place trust in yourself and your core values. Relaxation techniques, prayer, and meditation all have been proven to reduce stress. Friends, co-workers and school personnel may need a bit of coaching about medical conditions, but many find that addressing the topic directly is a relief and one that brings positive change in relationships or work/school environments. People often forget that external pressure can follow people home from the clinic, school, or workplace and this in turn creates more stress at home at the end of the day. Wellness can be an ongoing series of choices about events over which we have little control, so a positive attitude is important. We don’t have to like our reality on any given day – but we do have to accommodate it. Recognize that while we may not be able to control our situation, there is strength to be gained in knowing that we can exercise some control over our reactions to it.
“Wellness means being able to go on vacation without limiting it to driving distance for fear of blood clots. It means not being on the kidney transplant list waiting for “the call”…” (JV) If you’re living with a rare disease patient, no plans are made without thoughts of having multiple contingencies for the uncertainties that may interfere or arise. Far from carefree vacation thoughts, our plans are carefully made and always include a Plan B. Where is the nearest clinic? Have we packed extra meds and supplies? What if there’s a travel delay, an issue at airport security, or we have an urgent medical situation while in transit or on holiday? Wellness has an intellectual component, and as we gain knowledge about our medical condition and treatment we become better healthcare consumers and self-advocates. For those with a rare disease, educating ourselves means that not only do we hold a nuanced repository to add to the e-Records of our health history but also that we become empowered to become active participants in our healthcare.
“Wellness is going longer than a week without seeing a doctor.” (KS) Yes, we’d actually like to focus on other aspects of our lives but no, often medical issues are forced to become one of our priorities. Many patients with a chronic illness develop strong, personal relationships with our care providers and medical teams. We are grateful for the sense of community and strength that can grow when we connect with others who understand what we’ve faced, and what issues and needs are likely to arise in the future. It’s hard to find balance when a chronic illness inserts its demands into daily life. Your surroundings are another facet of an integrated approach to wellness, and in medical settings this is more easily seen on display in a pediatric office or a children’s hospital. At home, environmental factors may include relaxing or pleasing sensory considerations such as favorite colors, scents, or music. Nature is often acclaimed as a healer of spirit, so many rare disease patients relish time away from the doctor’s office to enjoying the health benefits of exercise or walking through some beautiful scenery. Whether it’s time reflecting alone or enjoying another’s company, participating in a sport or attempting a new skill, or perhaps creating art or music, time spent away from medical settings can renew, enrich, and engage us to strengthen us as individuals and to neutralize the effects of stress.
“Wellness is a carefree day for my daughter to enjoy summer activities with her kids….no appointments or schedules or dialysis…. just fun and laughter in the sun.” (DC) Isn’t that really what every person wants for themselves or their loved one? A chance to explore life, to try new things, to bask in the love of family and friends, celebrate successes and achievements, to feel achievement and fulfillment? Wellness is a concept that should integrate and balance all components of life: physical, mental, emotional, spiritual, environmental, and intellectual aspects. Those goals are no different for patients with a rare disease or chronic illness. Our definition of wellness may be slightly altered due to medical circumstances beyond our control. We may not lead charmed lives, but every one of us is dedicated to making the most of those precious ‘charmed moments’ in time when we are free to briefly forget medical cares and savor the sweetness of life.
The aHUS Alliance wishes to thank the patients, family members, and caregivers who contributed their definitions of wellness for this article.