One of the most frustrating parts of having an “Invisible Illness” is dealing with the people in your life who just don’t get it. With many illnesses it is clear to tell, just by looking at someone, that they may not be feeling well or they’re dealing with a medical condition. An invisible illness is just that – invisible.
When you are taking steps to truly manage your illness and prevent it from defining you, you’re going to appear to be fine to everyone else. That’s great, and is what so many of us want: to be treated like nothing is wrong. But then you’re invited out to dinner or some grand event and have to repeatedly say no to the same person because you have exhausted your energy reserves getting through a work day or a long doctor’s appointment. It doesn’t always make sense to the other person. “What do you mean, you can’t go out tonight? You were fine earlier. You look great!”
There’s a very fine line between keeping friends and family in the loop and understanding your illness (healthy attitude) and dwelling on the fact that you have an illness (not a healthy attitude.)
Here are some common statements those of us with an invisible illness might hear, as well as tips on how to gracefully respond (and if you’re reading this because you’re learning to support someone with a chronic illness, these will steer you clear of things you shouldn’t say to your loved one):
“But you don’t look sick.”
Response: “Thank you! I take that as a compliment! I try very hard every day to live and act as healthy as I can, even if I don’t feel well. Even though I may look well, I’m using a tremendous amount of energy just to get through the day today.”
“I thought you were over that?”
Response: “I’m doing much better now than I was a year ago, but a lot of that has been learning to manage my illness. _________ [name of illness] never goes away, but it can be managed. Some days are better than others. I just have to know how to manage my energy levels and expectations.”
“Oh, my friend/sister/mom had that and she just took some supplements and was cured. You should try that.”
Response: “Thank you. That’s wonderful for your friend/sister/mom. I’ve looked into and tried many alternatives to manage my condition. Not every treatment works for every person.”
“You just need to exercise more.”
Response: “Actually, exercise is a vital part of my staying healthy and I work out pretty regularly. I would definitely be in much worse condition if I didn’t exercise – but exercise alone won’t cure it.”
“You’re just stressed.”
Response: “Being sick can actually cause a lot of stress. I’m practicing a lot of stress reducing techniques because they’re vital to controlling my symptoms, but eliminating stress alone will not eliminate my condition.”
Add variations to any of these statements. It’s likely you’ll hear those and many more. The main thing to remember is that most people don’t understand what you’re going through. They usually do not have ill intentions; it just doesn’t make sense to them. So answer with a smile, keep it short and don’t waste your time trying to convince them that their comments may sound insensitive or ignorant. Hopefully, your gracious response will make them think about and explore the experiences of those with invisible illnesses.