How do you explain to someone that the cough, sudden chest pain, loss of voice, or labored breathing is not contagious? On my best days, I get strange looks from people because of the redness, and often purple hue, of my face. The slight scaring around my eyes and mouth. The knuckles and fingers that are so damaged that you may think I hung out in tough crowds or had nightly bar fights. There is no telling what is going on in a person's mind as they eye you, or shy away from you. The brave, or nosey, will ask what is up with my face or hands. I tell them the truth, in a simple, upbeat, matter of fact way.
The times I have so much cognative trouble I can barely get a sentance out, I am looked at as some how an idiot. People have no patience for it. And you quickly find out who is a control freak. The days you can't deal at all, because of pain or mental issues, you can find out what others really think of you from their looks or sly comments when they think you are out of ear shot. One such comment recently brought me to tears. The fellow employ felt that I was some how getting special treatment. After all, if I can't breath right or if I loose my voice completely, I can't very well stay at work. Leaving and going home to rest is my only option. My employers know my condition. Yet some how that is considered by some as special treatment. If they had to walk in our shoes one day they might just shut up for life.
I remind myself constantly that these ones do not see, do not know, do not and can not understand. Those who care enough to at least learn and sympathise are treasures. Those who will not are not worth our time or thought. Yet that does not mean that we have to put with a hostile work enviroment or even a hostile home. That is not at all condusive to our well being. As we know too well, my fellow lupies, our stress level is directly linked to our over well-being.
So how do we deal? For me, I keep a super, sometimes way too super, positive attitude. This throws people off even more, as if they expect me to some how be moping around and feeling sorry for myself. I focus on how Lupus has taught me to be a better, more considerate, and more self loving person. That I stop and smell the flowers, litteraly, is a sign of appreciating life, every day. Lupus is a constant struggel, as are the other issues that often accompany it. I have so much more appreciation for my "clear days" and use them to their full.
What are some of the ways you cope or deal?
