By Annaben Kazemi
We live in a culture that worships at the altar of wellness. We’re bombarded by ads that tell us we can be healthy all the time. It’s OK to get sick or to be in pain, but then we’re supposed to get better. Unfortunately, those with a chronic illness don’t get better. What’s worse is they don’t look any different from those around them. It’s surprising to learn how many medical problems are invisible to others. I’m sure that most television viewers who saw Venus Williams (who was diagnosed with Sjögren’s syndrome) watching her sister play in the U.S. Open thought: “But she doesn’t look sick.”
Invisible illnesses result in many common misunderstandings by those who are well:
Misunderstanding #1: “You don’t look like you are sick.”
Should a chronically ill person “spruce up” and risk people mistakenly thinking they can participate fully in whatever everyone else is doing? This is particularly a dilemma during the holidays and at family gatherings. There are two choices: 1) take great care to look their best for everyone, only to be criticized for not pitching in more with the cooking and cleanup. 2) stay in sweats, which can lead to feelings of guilt that they’re letting themselves go and not doing enough to lift their own spirits.
Healthy people tend to assume it’s all or nothing: Either they are sick, or they are not; either they are in pain or they are not. So, if they see the chronically ill person doing anything “normal,” they assume she or he is 100 percent well. I recently attended my son’s winter concert with my daughter who has a primary immune deficiency and was ill. Someone saw my daughter and assumed she’d recovered, unaware that she came from bed, used all her strength to attend the concert, and would collapse back into bed after the concert. People aren’t deliberately being insensitive. They just don’t understand.
Misunderstanding #2: “You would get well if only you would (fill in the blank).”
The expectation of perfect health is especially hard when facing pressure from family and friends to “hit the gym,” “stay in shape,” “take more vitamins” or “get a good night’s sleep.” Intense chronic pain or illness-related debilitating fatigue will not go away with strenuous exercise and vitamins, or even a night’s rest.
The amount of unsolicited advice given to people suffering with chronic illness is frustrating, even maddening. The lack of understanding from family and friends can have serious consequences creating isolation, which can be devastating.
Misunderstanding #3: “We never know if you’ll show up.”
One of the characteristics of chronic pain or illness is the unpredictability of its intensity on any given day. Patients have to try to predict ahead of time how they’ll feel so they can decide to even accept the invitation. Saying “yes” to an invitation when a patient may have to cancel at the last minute leads to apprehension and often letdown. If always played safe by saying “no,” a patient may miss out on some fulfilling activities and socializing.
The daily burden of not knowing what they can commit to can be exasperating. Before promising to attend even the simplest of activities, the plusses and minuses have to be weighed. This constant need to scrutinize activities can itself use up energy!
People who are chronically ill know the suffering that is invisible to the rest of the world. They recognize those subtle differences in demeanor and when symptoms intensify. That’s why it’s so important for patients to have a forum where they can get support and empathy to deal with the frustration and misunderstanding that accompanies having an invisible illness. This blog, as well as the IG Living Facebook page, are just two places where patients can connect with others.