Addendum to Title: Or to be even more specific, just don’t ask me how I’m feeling with my disability (stay tuned to the pain chart below so you can know pretty much how my body is feeling without ever having to ask in the future.)
I know, I know. The title must sound harsh to most people. Please let me explain myself, though, so you know the reason why I’ve so boldly made this request.
No matter whom you are meeting or seeing at any particular moment, there is always one question that accompanies the greeting. Don’t be shy. You know what it is! “How are you?” While I realize this question goes hand in hand with hello in the United States (I wonder what it’s like in other countries around the world), I am sure it didn’t start out with the intention of being a meaningless question. Maybe when it was first introduced as a way to start a conversation, people really did take the time to sit down and listen to how you are doing. When was the last time you responded with an honest answer and truly felt you were being heard?
However, what is the appropriate response in our society? “I’m good. Thanks! And you?” Everyone is supposed to be good, great, fine or okay so that the conversation can go in a new direction. But what about those of us who really don’t feel well? “You know, I really feel like crap right now.” This isn’t an acceptable answer because it actually requires the receiver of this information to care enough to ask why. To take the time to truly want to listen. To be able to suspend the pre-rehearsed conversation they had come up with as they were driving to meet up with you at the coffee house. Why can’t society slow down enough to be able to support those of us who are having a hard time? This question that is so full of meaning, “How are you?”, has lost all credibility when we don’t feel we can truthfully answer the question. “I’m feeling really down.” “Life sucks!” “I wish I was better.”
Personally, I hate the question. This has become even more pronounced since my dystonia diagnosis 4 1/2 years ago. Since then, my go to response has become “I’m hanging in there!” No one prods me about it. And to be honest, I don’t want to talk about how I’m doing. When you’re dealing with a disability, most people aren’t asking about how life is treating you or the emotions you are feeling at that moment. They are asking about your physical ailments. “Oh? So you had a bad day with your dystonia? Tell me more!” Actually, I don’t want to talk about it. I’m living with the pain and tremors every day. I’ve shared in my blog what I experience. As I write this, my neck is spasming back and forth against my neck pillow. And the pain level in my back and neck is at a 5/10. My average pain level runs from 3-8. So if we were going to chart this, this is what it would look like:
Pain Level: 3-5
If I’m talking to you, writing to you, or meeting you in person, you can assume I’m experiencing an average day of spasms within the 3-5 range of pain. This means I am in pain every moment of the day, and I can’t hold my head up on my own. I have most likely had a hard time getting comfortable no matter what I do throughout the day, and I try to make it through the day by doing basic activities like letting the dogs outside, feeding myself, and some days going to doctors’ appointments.
Pain Level: 6 -10
All of the above and then some…If I’m not communicating with you, responding to your communications, or have to cancel getting together, then I’m definitely at a 6 or higher. Most often, this involves having migraine headaches and not being able to sleep because of the depth of the pain.
It doesn’t help me to talk about my pain levels or how overwhelming my muscle spasms are on any particular day. It isn’t that I don’t appreciate people asking me how my health is. I do! But the truth of the matter is that focusing on it every time someone asks that question makes my symptoms worse. So let’s talk about anything but my health. If you really want to know about my pain, reading this blog is a good way to find out what my current state of being is. Or, if you don’t mind, perhaps I’ll just start responding with a number when asked how I’m doing. Then you can refer to the chart above to see what symptoms go hand in hand with that number. Since I’m finishing this post a couple weeks later than when I began it, I will update you right now. 7!
MY HOPES: I hope that people will understand that I do appreciate those who care and really want to know. And now they know how I wish to respond (or not) to this question in the future.
I’m not sure how other people with chronic pain feel when they are asked how they are doing, but I sure would love to know. Do you get relief from telling people exactly what your symptoms are at that exact moment? Do you feel like the people who are asking really want to know, or is it more of a formality? I hope we can be accepting of how different people react when they are asked how they are doing. Now you know what my wish is regarding this cultural norm. What’s yours?