Tuesday, November 3, 2015

"But You Look Good..."

There's a phrase that really gets to me as someone living with a chronic, invisible (most of the time) illness. I know that it comes from the best of intentions and is meant to lift my spirits, but to me, it also feels like it comes from a place of doubting that I really am sick. I know that it seems to come from a desire by the person who said it to feel better about the situation. 

"But you look good". Of course I don't look "diseased", unless I'm in active psoriasis flare, or am sporting the latest in NG Feeding tube fashion trends, you don't actually get to see my illnesses. My illnesses are buried deep inside, sometimes the only way for the doctor to really even tell what's going on inside is to actually go in with a set of scopes and see for themselves. 

What you can't see is that my insides are often a mess. I have little bleeding sores and blood vessels in my digestive system. What you couldn't see was a year ago when part of my small intestine was so inflamed that pictures of it reminded people more of a colon, and they thought that I might lose that part of my intestine as well. People comment that I look better with the weight gain since I'm no longer such a skeleton that you can count individual bones on me.

 But what they don't see is that there is no real explanation for the weight gain since I'm really not eating anything and my feeding tube calories have been reduced. They don't see that the weight gain has been really hard on my body, making me feel even more tired out than normal. It's impossible to see that the pain in my legs and joints makes me cry out at times and wakes me from my sleep. There's so much about my illnesses that just stay completely hidden. 

"But you look good" is a conversation stopper. I've usually just gave you the honest truth about how I'm feeling when you respond with that statement. It takes away my experiences and passes them off as not-important because I'm looking so good. This also happens quite often in healthcare when helpers make an assumption as to how we're really doing by how "good" we are looking. I've once spent 20 minutes going over my concerns with a healthcare provider, and at the end of my how-I'm-doing-update they responded with "But at least you're looking good". That doesn't mean much when I can't eat anything without either wanting to throw up or actually doing it. It doesn't mean a lot when I'm just not up to doing normal kid things like Halloween trick-or-treating. It doesn't bring me closer to my goal of wanting to feel better. 

Always remember that you can't judge a book by it's cover so you can't judge a person by their appearance. I'm thankful that at least I still have my "good looks" but when it comes down to it, it's more important that I feel good too. 

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