- “You would never know that there was anything wrong with you.”
- “But you look fine.”
- “You seem so healthy.”
- “You don’t look sick.”
For a person with an invisible illness, those statements are frustrating and, at times, downright demoralizing. The phrase “invisible illness” has become more common recently and for good reason. It refers to any medical condition that is not outwardly visible to others. While many disabilities are obvious, perhaps due to the use of a cane or wheelchair, there are countless diseases that remain unseen. According to one study, more than 125 million Americans have at least one chronic condition and nearly half of those affected have more than one.
In general, people mean well, yet there is a reason that the comments regarding the appearance of health feel like backhanded compliments. Many invisible illnesses are misunderstood due to lack of awareness and, as such, those remarks come off as dismissals. The sick person feels the need to justify their pain and is often left reeling by misjudgments. There is a prevailing sense of injustice at the necessity to convince others of the truth of their illnesses. Not only must they live with debilitating conditions that are painful and challenging every day, but they face skepticism from society…sometimes even friends and family. The ill person feels a lack of sympathy that can, unfortunately, turn to derision or scorn, ultimately being considered a hypochondriac or chronic whiner.
I suffer from lupus, fibromyalgia, and Sjogren’s syndrome, all of which are considered autoimmune diseases. I openly admit that I often feel the need to live a masquerade of health. The reason for that lies in the response of others toward the lack of outward physical manifestations of my illnesses. There is a prevailing attitude that, if someone is suffering, it should be obvious to everyone and, if it isn’t, the person is exaggerating. A bit of makeup and a pleasant facade gives the indication that all is well. They see the effort to look presentable and get out of the house as an indication of wellness. It is in what they don’t see that lies the reality. Most mornings I wake feeling as if I have not slept at all, with stabbing pains in my joints and dull aches in my muscles. Merely showering leaves me exhausted, needing a moment to lie down and recuperate afterward. Others don’t see the tears, fatigue, excruciating pain, long nights, and multiple medications to simply get the body up and moving. They do not see the effort it takes to stand in front of them and smile.
The days of an invisible illness sufferer are riddled with a barrage of whispered remarks and insensitive encounters. Many are considered lazy and uninspired, as illness wreaks havoc on their bodies. This lack of understanding results in furthering anxiety, depression, hopelessness, and feeling lost and alone. Here are a few things NOT to say to someone with an invisible illness:
- You look too healthy to be sick.
- You need to toughen up.
- Perhaps you should see a therapist.
- Everyone has bad days.
- You just need to exercise and diet.
- You should get out of the house more.
- I wish I could sit around all day.
- You would feel better if you lost weight.
- You should have more faith or pray more.
- Your head is making it worse.
- Everyone gets tired and achy.
It all comes down to this…when you cannot see someone’s pain and feel the need to tell them how to manage their condition, remember that they are fighting this battle alone, doing the best they can, and they neither need nor want your judgment. All that is needed is your time, your compassion, and refusal to focus on the negatives. I stumbled upon a wonderful quote by Wade Sutherland, who said, “We may not look sick, but turn our bodies inside out and they would tell different stories.” Perhaps our contributions can, at times, only be spiritual…but they are heartfelt and done with all the energy we can muster.