Living with Invisible Chronic Illness
Many chronic illnesses are invisible to others because the symptoms are not apparent externally, some or all of the time.
While these conditions can make it difficult for a person to live a full and productive life, many patients with invisible illnesses look healthy on the outside, leaving them to deal with friends, family members, and even medical practitioners who question whether they are truly sick.
There is no one accepted medical definition of what an invisible illness is, however these are generally chronic conditions with debilitating pain and fatigue symptoms that can’t be easily recognized just by looking at someone.
"Gee, she looks so good ... is she really sick?"
"This is the third time he cancelled our plans. Maybe he just doesn't want to see me."
"HMMMM. He's no more disabled than I am (said about a person parking in a spot for the disabled who looked oh so good … on the outside)."
Examples of Invisible Chronic Illnesses
Invisible illnesses can include:
Long COVID
Myalgic Encephalomyelitis (ME - aka chronic fatigue syndrome)
Lupus
Fibromyalgia
Crohn’s disease
Multiple sclerosis
Asthma
Irritable bowel syndrome
Autoimmune diseases
Rheumatoid arthritis
Celiac disease
Depression and anxiety
Several still misunderstood and often misdiagnosed disorders
The Challenges of Invisible Illnesses
Life can be challenging for individuals with invisible illnesses, as their fatigue and pain are constant or unpredictable, and limit their ability to accomplish the usual tasks of daily living, do their jobs, and participate with the people in their lives. As a result, unless they are able to effectively communicate what they are experiencing, their symptoms and limitations may not be easily understood or recognized by those around them.
Invisible chronic illnesses affect both patients and those who care for and about them. Helping patients acknowledge their condition and communicate about their limtations, as well as what works best, can help deepen understanding and intimacy with others in their lives.
Barbara’s progressive diabetes has impacted her eyesight and balance, among other things, though just looking at her you might not see her invisible symptoms. Walking with a cane helps her feel “seen.” People on the street notice and are less likely to push, bump into her, and throw her off balance. In addition, the cane offers an extra measure of support, which enhances her confidence. While having to come to terms with being SEEN as disabled, she is more willing to walk the streets and go new places.
We left the neurologist’s office with a recommendation that dad start using a walker. He had Parkinson’s Disease. In silence we drove to the store where, following an argument about the purchase, a new walker with a seat for when he got tired was loaded into the car. Once home he said, “If you think I’m going to take that thing to the club when I have lunch with my friends, you think again!” I responded, “Well, with all their oxygen tanks and canes, it will certainly take some maneuvering.”
