Myth #1: An Invisible Illness Is Always Invisible.
You would be surprised at how often this kind of idea is voiced by friends, family, and clinicians. Working a clinical job, there were often days I would ever so slightly limp down the clinic halls. Colleagues were always surprised to learn that I had not sprained my ankle, but rather, was dealing with “just arthritis.” On a day-to-day basis, even on an hourly basis, my disease can go from completely invisible to painfully apparent. My own experience is hardly unique, and there are multitudes of patients with conditions that act similarly — rashes breaking out in visible areas without warning, joints swelling in the hands from one day to the next, the list goes on. Patients with chronic conditions often live in a state of flux, and although many of us learn to accept the transitory nature of a disease or its outward symptoms, often those around us do not.
Myth #2: The Way a Person Looks Is an Accurate Reflection of How They Are Feeling Physically
“You look great! How are you?” Those three words often stir up enormous internal strife. Do I lie in response and say I’m feeling great? Do I share that I’m feeling terrible? More often than not, my go-to answer is a “thank you” before turning the question on the other person. I’m of the belief that most patients with invisible health conditions have experienced this to some degree — you cannot see someone’s enlarged spleen, their continuous glucose monitor, their swollen knees hidden by jeans. To the outside world, someone might look just fine. The reality is, we cannot judge how someone feels by appearance alone, and it is worth considering that our outer appearance is not reflective of how we may be feeling internally — physically or emotionally.
Myth #3: Invisible Illnesses Do Not Warrant Disability Accommodations
Years back, when I had to use a wheelchair in large stores or for long distances, my favorite game was seeing how many people gasped when this young person in the wheelchair got up and walked. Again, this experience is not unique to me, nor is the experience of having someone question the legitimacy of a handicapped-accessible placard, cane, or the use of an elevator to go up one floor. This is important for anyone to understand, but in particular for clinicians: Invisible illness is not a one-size-fits-all experience. My own experiences with my rare disease taught me as a medical assistant to be far more patient and empathetic, and to keep an open mind when seeing our own invisibly ill patients in the clinic; a 20-minute follow-up is not representative of the whole picture of how an illness impacts one’s life. Whether in the realm of politics, medicine, or education, decisions on disability accommodation requests should be made with this concept in mind
Myth #4: Working from Home or Being Home Frequently While Chronically Ill Is an Ideal Way of Life
You hear this a lot, across so many disease communities — this idea that working from home or spending the bulk of one’s time at home is ideal. To those without invisible or chronic conditions, to be at home is to rest, to have a break from the 9 to 5, errands, or social obligations. To those who find themselves at home due to illness, often it is confining. Taking care of yourself in the midst of a disease as well as managing appointments and the daily ins and outs of treatment is frequently a full-time job. Staying home is not often a choice for many with chronic or invisible illness, and much of the time, you’ll find that people in this position would much rather be out and about, working, spending time with others, or enjoying the mundane parts of a daily routine outside of home.
Moving Beyond Misconceptions: Why Does This Matter?
According to a 2012 report from the Centers for Disease Control, nearly half of all adults in the United States have at least one chronic health condition, and one in four adults has two or more conditions. Despite the prevalence of chronic illness, evidence-based research on the prevalence and public perception of invisible illness is not as readily available. Perhaps a lack of social awareness and understanding is to blame. Frequently, as a society we hold onto this idea of chronically ill or disabled within a rigid construct — people who are either profoundly mobility-, sight-, or hearing-impaired, as opposed to “healthy.” To acknowledge and understand chronic illness is to acknowledge and understand that for many people, there may not be a before and after, nor a cure. Understanding and moving beyond misconceptions of invisible illness makes the notion of chronic illness more visible, relatable, and helps lessen the shame and stigma often associated with considering oneself chronically ill or disabled. Just based on statistics alone, chances are, you know someone with an invisible illness. Perhaps a friend has diabetes, a loved one has depression, a mentor has sickle cell anemia, or your doctor has a rare disease. Empathy starts with understanding. When we have empathy for those around us, when we make efforts to understand those around us, we have the ability not just to strengthen relationships with others, but to create a more empathetic and socially aware medical culture.