You Look Great!

"You look great!"

This phrase has come to surpass "How are you?" as my least favorite statement. That might seem odd, both phrases seeming innocuous, pleasant, even something you would want to hear. But for those of us living with an Invisible Chronic Illness, it becomes nails on a chalkboard. The implications of that phrase run deep. Much deeper than the giver of the compliment could comprehend.

Now, before you write me off as an overreacting bitch, let me say that I fully understand that people saying those painful words say them to make me feel better, not to make me cringe. But the effect on me is this: wanting to lunge at them, tell them to shut the #@% up, and/or to crawl into a hole and never come out. It makes me feel lonely, misunderstood, and like a failure. Let me explain.

First off, the times that I get told "You look great" are usually the times that I feel the crappiest. For example, when I'm having a Crohn's flare, I loose weight, falling into that extremely messed up beauty standard of skinnier is better, no matter what. The internal fevers and chills give my cheeks a rosy glow that signifies health to most people. To me it means uncontrollable sweating, and my body going haywire internally.

But I don't let my illnesses and disabilities stop me from having a positive attitude, from going to work, from interacting when I can with the outside world. So how do I respond when I'm feeling like a pile of steaming dung, and every where I turn I am faced with those nails on a chalk board: "You look GREAT"? I usually say: "thanks" and leave it at that. But implicit in that loathed statement is that if I look great, I must feel great. I don't mind most people thinking that. I don't need everyone to know how I suffer, I don't need to define myself by my disabilities alone (though there is no denying they have helped shape who I am, and what I do, and I am not ashamed of that, or I try to not be ashamed of that because I shouldn't be ashamed of it).

The problem comes when it becomes difficult to get people to respect the limits I must set if they think that I'm feeling great. Plus, many people who know that I haven't been doing great (for example, I just had brain surgery, and the honkin' scar that goes from mid skull to the base of my neck, along with the walker I'm using so that I don't fall over when I loose my balance) makes it hard to pretend that everything is OK. So people expect an explanation. Why are you relying on these things that you obviously don't need, why can't you hang out all night long partying, why can't you come back to work, why can't you just push yourself like we need you to when you look great?

It's not just me. From an article from the St. Louis Dispatch on Debi Stanley, a woman living with chronic pain:

Stanley felt isolated, angry and stigmatized, Rengo-Kocher says.

"She needed someone to listen to her, believe her, follow her through the process of controlling her pain instead of letting the pain control her," Rengo-Kocher said.

Stanley's frustration was not unusual, says Penney Cowan, founder and head of the American Chronic Pain Association.

Much of the frustration, Cowan says, stems from the inability of others — including family, friends and co-workers — to see the source of the pain.

One day you're nearly fine, and the next day you can't move. "That sends mixed messages to people when they watch," Cowan said, speaking from her office in Sacramento, Calif. "You could do it today, so why not yesterday?

"It sends a confusing message to the person with the pain, too."

Living with pain sucks, but what sucks even more is when the people who love you and see you every day don't really and fully believe you. It gets you doubting yourself: these people know me, there must be some truth to their disbelief. Maybe I really am causing myself this pain, maybe I really do need to just buck up, maybe I'm not trying hard enough and that is bringing on the pain, maybe I really do just need to get out of the house and that will make me better. Being in pain and thinking that you have control over it, and are just not exercising that control.... ouch. I go through cycles of acceptance, where I realize that I don't have control over the pain, but that doesn't mean that I don't have control over my happiness, my life, my loves and passions, my attitude. But it's amazing how quickly I can be knocked out of that acceptance by one statement or implied statement from someone else, from strangers, acquaintances, but especially from someone I care about.

It has taken me a long time to come to the realization that people can't read minds, and that like everyone else in the world, I sometimes need help. I can't do it all myself. No one can. In order to get the help I need, I sometimes need to ask for it, specifically. That is when I am often faced with those doubting Thomases: "Oh, you can do it. Just try harder. I don't want to coddle you, that's just doing you a disservice. You shouldn't coddle yourself." and so on. That's when the desire to crawl into a hole starts kicking in.

I'm a pretty tough chick. I've traveled the world, pushed through extreme fear, emotions, pain, depression, extreme work conditions, trauma (both physical and mental), being a caregiver for loved ones, and more. And I would like to think I've done these things without whining, without complaining, I've pushed on, without letting on that all I've wanted to do was give up. So when I do finally ask for that help, because I really really can't do X on my own, and am met with such reactions.... I feel misunderstood and terribly terribly lonely.

I may feel lonely, but I've come to understand that I'm not alone.

September 10-17 is National Invisible Chronic Illness Week. There are loads of great resources out there for folks living with hidden disabilities, and those that love and want to support and understand them. Some of my favorite websites that fall into that category are the following: 10 things NOT to say to a chronically ill person (scroll down the page to get to the list); ChronicBabe.com; Beyond Chronic Pain; and the American Pain Foundation.

In honor of this week, and in honor of those who are in your life, or who will be, whether you know it or not, (remember, they aren't called invisible for nothing) who power through life regardless of what holds them back, put your doubts aside and take a looksie. You might learn a thing or two. And for those of you who live with an invisible illness, do the same, in honor of yourself, the person in our lives we are most often the hardest on, and who we need to care for and understand before we can be the great friends, spouses, parents, and family members that we long to be.