An invisible illness is generally defined as any medical condition with symptoms, characteristics, or consequences that are not visibly apparent to other people. Simply put, you don’t look sick, so you must not be sick. Right? No, not right.
The invisible illness dilemma can be quite frustrating for the person who has a chronic disease. This frustration can become escalated when awkward situations occur because of the invisible illness, especially in public.
I can offer you an example based on my personal experience living with rheumatoid arthritis (RA). Years ago, I went out to dinner with my husband and two of our friends. My husband was driving and our friends were in the back seat. He parked in a handicapped parking spot, as he should have, because I had a handicapped parking permit. He hung the sign on the mirror and the three of them were quicker to exit the car than I. Occupants of another car that was driving by stopped to chastise us for “illegally and inappropriately” parking in the handicapped spot.
It is easy to see how this became an issue since they saw the three healthy individuals first, and even when I emerged, I didn’t “look” disabled, especially at first glance. They weren’t even convinced when I disclosed that I had rheumatoid arthritis because, after all, arthritis is exclusively an old person’s disease. Right? No, not right.
People judge other people — it's human nature. People react to what they see. Based on what they see, they formulate a thought and pass judgment. Another awkward example: At the U.S. Post Offices where I live in Las Vegas, there is no line that is designated for handicapped or disabled people. Recently, I inquired if they had such a line and was told “No, just go to the front of the regular line and we will help you next.” Incredible, I thought, to ask someone with an invisible illness to, essentially, cut in line.
When you think about invisible illness even more, it is somewhat flattering to look well despite the illness. I daresay that there are people with rheumatoid arthritis who try to hide the visible effects. I was with my mother many years ago when a clerk in a bakery asked me if I had rheumatoid arthritis. The clerk recognized it in my hands because they had a relative with the disease. I wasn't offended by the question and answered honestly that I did have RA. My mother was horrified that the clerk asked such a personal question. Visible versus invisible — perhaps it's a no-win situation. Maybe it's more about realistic expectations.
Many people, but not all people, are aware that joint deformity is among the signs and symptoms of RA. Hand deformity is a common, visible sign of the disease. Foot deformity is also associated with RA, but it may less visible covered by socks and shoes. If you walk with a limp, or have other gait abnormalities, that may be apparent to others, but they wouldn't necessarily think of RA versus an injury.
Numerous symptoms of RA that are invisible. It is a lot to expect another person to know what you deal with on a daily basis unless they know you personally.
Pain Even if pain causes you to grimace, others won't know what is wrong or specifically what is hurting. They won’t know if it's acute or chronic, mild, or severe, or any other pertinent detail about how it impacts you.
Inflammation RA is an inflammatory type of arthritis. Inflammation is part of the underlying mechanism that causes joint damage. The inflammatory process occurs behind the scenes, so to speak, and isn't visible.
Persistent fatigue This can be an enormous problem for people with RA. While RA-related fatigue isn’t well understood, it's likely that pain, inflammation, and insufficient sleep contribute to it.
Joint stiffness Joint pain and inflammation result in stiffness and limit your range of motion. Morning stiffness is a primary characteristic of RA, but most people don’t see you when you wake up and get out of bed — it’s invisible to them.
Joint swelling Joint inflammation can cause swelling. Often, signs of swelling are covered by clothing, so it is invisible to other people.
Anemia Anemia, especially a type known as anemia of chronic diseases, is not uncommon with RA. This, too, is an invisible consequence of the disease.
Not only are the aforementioned physical signs and symptoms of RA invisible, the effects of the disease on quality of life are also invisible. RA can impact many areas of your life, such as your work productivity, family life, and social life, causing functional limitations and physical limitations that affect activities of daily living and your ability to work, and contributing to depression, isolation, and more.
Francie Hartsog, a professional counselor based in Charlotte, North Carolina, lives with a rheumatic disease and has a unique perspective on invisible illness.
I asked her about the frustrations of living with invisible illness — should we really expect people to understand what they haven't experienced for themselves? Are we expecting too much of others, or are we just expecting an overarching kindness that would cover all situations?
“In the 22 years of living with invisible illness, I have learned that pain and suffering are subjective, and everyone suffers from something,” Hartsog says. “I do not expect or want any special 'understanding.'"
When asked what she tells patients who can't seem to get beyond the frustration, she responds, “Stop giving the illness so much power. You are not the illness. Find other things — positive things — to focus on.”
“Acceptance is key and, for me, part of accepting was also realizing my disease has been a 'blessing,'” she says. “My illness has taught me so much about myself, and led me to a career in counseling others with chronic illness,” she stresses. “It's important to look for blessings in everything.”
When you live with rheumatoid arthritis, it's important to focus energy on living well with the disease. By being engaged and compliant with a treatment plan, having a positive attitude, and accepting and adapting to the changes that RA brings into our lives, we can manage the diseases. Frustration is an inescapable part of RA and it comes at us from many directions. Knowing that we are doing our best to live well with RA must override any frustration, though, especially when it's brought upon us by other people.