March 23, 2010
Her self-esteem may be cracking, the private, undetected casualty of a debilitating chronic illness. Ann Marie Johnson hurts from her war with multiple sclerosis. But that is for few to know. She wept as she talked to me about her self-doubt, her fears for the future. Ann Marie longs for a husband and children, but believes MS has taken those from her. Often, she is reduced to just getting by.
You would not know it. Usually, Ann Marie puts her best foot forward. That becomes her great defense mechanism. Her sadness stays private as she heads for the glib. “I’m just a young, sexy black chick from Brooklyn,” she laughs. With MS, I add. “With MS, she says a little more seriously.
I wonder aloud if she feels less sexy because of the MS. “At times. Some days, I want to put on special shoes, and I can’t because my hands don’t work or my legs, you know, numbness.” Ann Marie pauses. “And forget about the cute little shirts. I mostly can’t button them.”
The refusal to casually acknowledge difficulties is a quirk we both share. I wonder if it is the fear of appearing weak. Ann Marie just goes on automatic pilot. “You got to just smile and when somebody asks, how is it going, it’s going okay. You just say it.” As if anyone wants to hear the truth.
One problem is that MS, as with other chronic conditions, may not appear obvious to the casual observer. “You can say it’s a rough day. But if you don’t look like it is rough, your honesty can be taken for exaggeration.” Some of us joke about people saying, but you look so good, evidence, much to their relief, that we are not really sick.
Friends and acquaintances do not want us to be sick. They hate the idea, so they minimize everything. “You say the fatigue is kicking up,” Ann Marie says, “and they answer, ‘oh, you’re just tired. Take a nap.’ They don’t understand.” Or want to. I have been legally blind for years, with badly damaged vision from my MS. People ask what is wrong. Bad eyes, I respond. That is good enough for them.
A sick person just knows instinctively who to shield from the truth because they can not handle it. “Sometimes it depends on the audience, maybe family and friends. Sometimes you have to put on a good face and give non-answers. I can put on a really good face.”
I know her game. I have played it myself over the years, never really understanding my own need to outwardly appear so calm and at peace. Neither applies to my true state of mind. We need to appear normal to succeed. Perhaps people believe, hope, really, that we are going to be alright. To appear in control, the fiction goes, keeps us in control. Look the part, and it can come true. And we all live happily ever after.
I think sick people worry about what other people think. We are scared. Is that why so many with chronic illnesses feel the need to put their best foot forward?