I often face the dilemma of how to answer two very common questions: "How are you?" and "What happened?"
People that already know that I am "sick" in some way will often ask the question, "How are you?" It is always a difficult one to answer. If they only want a short answer, I simply say, "okay", whether I'm on the verge of physical and emotional break-down or not. But often, people really want to know how I'm doing. If I don't see someone very often, a common response for me right now is, "Just waiting for surgery. Hoping it will be soon." If it's someone I see on a regular basis, I have to try to buffer the truth in some way. No one wants to hear me say, "I'm in so much pain...I don't think I can handle this anymore...I want to cry...I just stopped crying...My heart is racing...The room is spinning...I can't catch my breath." So I never give that answer. I'm more likely to reply, "It's a struggle, but I'm staying strong." People really like to hear optimism. Somehow, it makes them feel better if they think that I have a positive attitude.
When you walk around in a rigid neck brace, and use a wheelchair part-time, you often get the question "What happened?" Most people automatically assume that I've been in a car accident. And most people, even strangers, frequently, ask what's wrong. However, they do not really want the answer to that question. There is no easy answer, since there are multiple diagnoses, and no one has heard of them. I can't simply say, "I have MS" or "I have lupus" or (fill in the blank with other more familiar disorders). Even though people don't necessarily understand these conditions, they have heard of them, and they take them seriously. So, I find myself making up the strangest answers. I often say "I had surgery on my neck and skull," but sometimes people will ask how long ago, so that's a bad answer. Maybe just "I have a complex spinal/neurological condition," is a better way to go. Then, there's the people who are really curious, and they want an actual medical explanation. That's hard, too, because I don't know which illness to pick or how to describe it all in a succinct fashion.
So, I'll keep working on how to answer these questions. I've seriously considered printing up a small informational brochure briefly describing each of my conditions for people. I'm just not sure how they would react. It seems like a simple solution for me, but I suppose others might not agree.
