People ask me how I’m doing fairly frequently. I appreciate this question, but I don’t think they’re prepared for my honest answer. They’re not expecting to hear a novel, and my chronic state of physical well-being is pretty complicated. My automatic response is usually short and positive. Good. I’m hanging in there! I’m all right. It’s all a lie. I’m terrible. I’m barely making it. I’m hanging by a thread.
If I were to honestly answer this question, I would likely take you by surprise. If I told you that most days my every move is a struggle, would you even believe me? If I told you my legs shake when I try to stand for a few minutes and that my upper arms are sore and tender from doing nothing, where would the conversation go next? Would you ask me more and genuinely want to know? Or would you feel uncomfortable and not know what to say? I would probably feel uncomfortable too. That’s why I lie.
If I were honest with you about how my body feels when I wake up in the morning, you would likely think it’s not possible to feel so battered every single day. And if I told you just how many activities I can’t partake in because I am too weak to stand, you would likely feel pity for me. And your pity becomes my self-pity, and that’s not good for either of us. And so I lie. Because society doesn’t understand chronic illness. There is no place for invisible disease in our fast moving world. It is not fully understood. It is not fully accepted. And it is not fully compatible with life in the 21st century.
I would like to be honest with you. I’m just not sure you’re ready for the truth. I’m not certain my story will sound plausible to you living in your healthy world. I fear being unbelievable, and, yet, at the same time I’m learning to not care as much what other people think. But for now, I’m stuck somewhere in the middle: trying to have my imperfect life with chronic illness fit into our world of perfection.
And so when you ask me how I’m doing, the words roll off my tongue. Maybe one day I’ll tell you the whole truth. My invisible illness has many colors and many personalities. And when the world is ready, I will paint the picture of chronic illness in its entirety for all to see.
Thinkstock photo by Michael Blann