Between the two of us, Trent and I have a veritable laundry list of ailments, diseases, afflictions...whatever you want to call them. I have even written some blog posts about them. But as a general rule, we try to keep these things low-key. Yes, we genuinely have some things wrong with our bodies and/or minds, and they are very serious. But we do not want these things to be the sum total of our existence. Yes, there are times when we have to tell people who don't know us really well that we have these problems. For example, I might have someone tell me, "Oh, honey, you should put down that umbrella and get some sun on your face." After politely declining several times, I might need to tell them that I have lupus and sunbathing and lupus just aren't a good combination.
This sort of admission will often lead to an uncomfortable conversation in which the other person feels compelled to call you a poor, poor thing and then ask you to relate various aspects of your illness. While I love and appreciate people who are genuinely caring and sympathetic, these conversations or moments can be unpleasant or even become unbearable. You see, I am more than my diseases. As I was told by someone else with lupus just after I was diagnosed, "Lupus isn't who I am. They're not going to put 'she had lupus' on my gravestone." And Trent feels the same way. We don't want people to find us interesting because we are the ailment of the month. We want to be interesting because of the things we have learned, or our experiences, or our brilliant sense of humor.
That's why I don't wear shorts. In the most intense summer weather, you'll see me sweating my guts out and complaining about how terribly hot it is. Why don't I wear shorts? Because I don't want to talk about why my legs look the way they do, discolored and unattractive. I don't want someone to come up to me and say, "OMG! What happened to your legs?" I sometimes have to count to ten to avoid saying "OMG! What happened to your manners?" Because I do have good manners, I will briefly explain that I have chronic blood clots secondary to my lupus. But I'd much rather talk about a book I just read, or a favorite movie, or just about anything. That is why I don't wear shorts. And I have never owned a button or t-shirt having to do with any of my afflictions.
I am not saying that it is wrong to wear something that raises awareness of a disease or condition that you or someone you care about is experiencing. I may be a raving lunatic, but in spite of my assertions to the contrary, I am NOT the meanest person in the world. But don't we all know at least one person who wears an illness, either real or imagined, like a badge? Someone who makes a point of going out in public, or perhaps family gatherings, wearing something that points out that they have X Syndrome? Some people seek to use their ailments to position themselves in the center of everyone's attention, seeking the sympathy they seem to need to feel complete. Oh, I'm so worried that I sound like an insensitive cow right now!
Perhaps recounting something that once happened to me will help clarify my point. When I was hired in the banking call center I have mentioned in other blog posts, one of my coworkers heard that I had lupus. Her approach to her illness was the polar opposite of my own. One day, she came over to my desk and began talking to me about my experience with the disease. "Do you have headaches?" I told her that yes, I had had headaches literally every day since late 1988. "Do you ever have pain in your chest?" As a matter of fact, I was experiencing pain in my chest that very day, and had been for several days. "Well, how do you handle it? Sometimes I just want to stay in bed all day." I told her that I had days like that too, but I just ignored them and kept on living. She went back to her desk, and within moments my manager showed up, grinning from ear to ear. She explained that this staff member was infamous for using her illness to try and get sympathy from anyone who would listen. She was thrilled that I had given an example of not just submitting and letting it overrun me, but fighting back.
And no, I don't think my approach is better than anyone else's. I have had to spend a lifetime not giving up, and it has become ingrained in me. It fits in rather well with these lines from Dylan Thomas:
Do not go gentle into that good night.
Rage, rage against the dying of the light.
My ailments, like Trent's, may have the power to destroy my body or end my life, but they had better be ready for one heck of a fight. Which may be why I identify with this quote from the movie Shawshank Redmption:
"Get busy living, or get busy dying. Damn right!"
Postscript: I know many of us have diseases which are beyond our control. The only thing we can control is how we react to them. May your will to fight be fierce!