Now that I have joined the ranks of those with chronic pain, I'm very curious by how this simple question, "Hi! How are you"? should be answered.
I actually hate the question now. The answer used to be simple. "Fine! How are you"? Now....not so much.
I feel like I should still say I'm fine. But that feels untrue. Part of me wants people to know how much I'm struggling on the inside with this. I want to talk about it to my friends. I don't want to say I'm fine when I'm not.
But people don't really and truly want to know the answer to that little question. They want to hear that you are fine, and move on. People get sick of hearing you say you are in pain.
So, I reserved the honest answer for very few people. I hate that pain is so isolating. If you talk about it too much, you're labeled a complainer. If you talk about it at work, people think you are shirking your part of the workload. You are a bummer at parties if you talk about it.
If you do happen to go out and enjoy a good day, people think you are not still struggling with the overall big picture of a chronic pain sufferer. Sometimes I feel like if I even smile or laugh, someone is ready to pounce and say "a-HA! So you AREN'T in pain! Someone in pain wouldn't laugh or act silly!"
I have it so much better than so many other chronic pain sufferers, that I feel ashamed of complaining sometimes. I feel like I should just suck it up and stop whining. No one, not even doctors, want to keep dealing with someone who is not getting better.
I'm starting to feel joyless, and I've really only begun on this journey. Does anyone else ever feel the same way?
I really think that people don't really mean a thing when they say how are you it is really just a common American colloquialism that we all use in greeting another person either a friend or even a stranger. I think most people say how are you and continue walking not even listening to your response. When I am with family members who understands my condition and the nature of my many invisib le diseases; I will often use the opportunity to simply check in and say you know today is not one of my best days I'm feeling a lot more tired than usual and I hope you'll kind of watch out for me while or walking because I'm a bit unsteady. this lets that person then quickly know how I'm doing and giving them some feedback about what I really need that would be most helpful that day.
so many times strangers or people we know from my child's school or our place of worship; will come up to us and say please call us if there's anything we can do and I'm never really sure if they mean it. Often I don't even know their name or their phone number. But at times I have been known to say well may I have your name and your telephone number and would she be willing to let me call you and talk for a few minutes sometimes when I'm not feeling real well or you know you live only a couple miles from me there are times when I am not able to arrange transportation for my son home from school would you be willing to drop him off at my house if I were to call you. often these idle offers of help are just being polite but often neighbors and people around you don't really know what kind of help you need or what they are supposed to say. I mean if you have a chronic disease do you want a person every day to ask how are you or tell me what your pain scale is from 1 to 10...
I used to take the question to heart and want to tell people just what was going on with my pain at that moment, but the pain becomes such a part of you, such a part of your life, that now I look at it in terms of how the pain is relative to how it is during a major flare. If it's an average pain day or even a little bit elevated, I just say "I'm good! How are you?" because in the grand scheme of my life as it will be from here on in, if I'm breathing and have control over all of my limbs, I AM doing well.
Y'know, one night a month or so ago, I was sitting on the couch crocheting when it dawned on me that something was wrong. I couldn't put my finger on it, but SOMETHING wasn't right. Then it dawned on me - for that brief moment, for whatever reason, I had no pain anywhere in my body! Did I revel in the moment? No! What did I do? I PANICKED! I practically had an anxiety attack because I am so used to having pain constantly that I forgot what it felt like to NOT have pain. I was literally afraid I was dying or, worse yet, had died. I looked at DH and said "hey!", and when he looked back at me and said "what?" I had to play it off like I had forgotten what I was going to say, when all I really wanted to make sure of was that I WAS alive and that he could see and hear me. How awful (and really kind of funny now that I think back on it) is that?
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