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Today's diary by: andsarahtoo
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Last night was my older son’s first Tiger Scout meeting. He looked righteously grown-up in his uniform, and he was pretty pumped to get there. For the first half-hour or so of the meeting, the kids sat around a table and the parents stood off to the side. After ten minutes, as I shifted from one foot to the other in increasing desperation—prolonged standing aggravates my joints and my nerve pain—I thought about sitting quietly on the floor, or asking discreetly for a chair. I wanted to say, "I have a chronic illness, and it hurts to stand."
But I didn’t. I dealt with it. I didn’t say anything because all the other parents were standing, and I didn’t want to look like a princess or embarrass my son. I didn’t want the den leader to think that I’m incapable, because I do have a lot of good days and I will be able to do most of what the den is doing this year. I’m new to this town, and I would like to make some other mom friends, and I didn’t want to alienate any of them by being "the sick girl." In other words, I thought it would be better for everyone if I wasn’t sick, so I played a little game of make-believe.
Today, everything is swollen, I’m asleep on my feet, and I am having significant trouble with the stairs.
As I sit here soaking my feet, it occurs to me that the real reason I didn’t seek accommodations is that I’m not OK with my status as a Sick Person. I’m embarrassed and ashamed—even more than I was when I was very ill with my other invisible illness, depression. Back then, my mental state was such that I didn’t much care what anyone thought—and I knew that everyone hated me anyway, so it didn’t make much difference. Now I’m a mother, and a student, and a resident of a new community—and dealing with the way I feel about my illness can be as hard as the illness itself. I want to tell everyone that all this stuff—my lack of mobility at times, my weight, my exhaustion—isn’t me, it’s the demon lupus. But every time I want to say that, I’m excusing behavior I think is wrong.
But it’s not wrong—it’s just what has to be. And it’s part of who I am. So I’m done with shame.
Every time I meet someone, I want to say tell that that I’m not really fat. Not me. I’ve never been fat; it’s just that the steroids put 65 pounds on me. But, in point of fact, I am fat. Yes, it was the lupus treatment that did it, and now I have to live with it until I can figure out how to get rid of it without making my fibromyalgia very, very angry. The key idea is just that, though—"live with it." I’m fat, and I’m sick, but I’m alive and my organs are all in good working order again. I’m not going to be ashamed—I’m going to be happy that I’ve come this far.
Every time someone asks me what I do, and I say that I’m a student and a stay at home mom, I want to add that I had to give up my job because I am too sick to work at the moment. It’s not me, you see—I’m not lazy, I’m not some layabout living on unemployment and eating bon bons—it’s the demon lupus. But, in fact, I’m enjoying staying at home. I’m learning new things about my kids every day, and I’m going to be able to focus on my studies like never before. I’m volunteering at the school and trying to write. Yes, I am 32 years old and living off handouts from my dad. But it’s going to enable me to get my degree and stay healthy for my kids—and I am not ashamed to be doing what’s best for any of us.
I feel a sting of shame when I circle the parking lot five times, looking for the closest space because my joints hurt. I feel guilty when I watch movies with my kids instead of going for hikes on days when I just can’t move that well. I feel like a failure when my boyfriend walks in the door and the first words out of my mouth, after "hello," are ‘I need to go take a nap." I feel like The Worst Mom On Earth when I have to tell my little guy to find something else to play on, because after ten minutes of pushing him on the swings I kind of want to keel over and die. But I refuse to feel that way any more.
I have beautiful, happy, well-adjusted kids. I have a healthy relationship. I have the respect of my professors and the love of my family. I had all that before I had lupus, and I have all that now. Nothing has changed except the way I feel about myself—and that is within my control. I’m going to start thinking affirming things about how well I have handled my illness, and how much better I am. I’m going to stop seeing my immune disorder as the enemy, and come to some kind of peace with the way things are.
If I have to be a prisoner of my joints and nerves—I do not have to be a prisoner of my own preconceived notions as well.
So how have you come to terms with your illness? How do you feel about it—and about yourself as a result of having it? Is it time to give yourself a break from your own expectations?
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