This is a pretty normal opening question to any conversation, right? For the most part, people respond with either "Good," "okay," "fine," "alright."
A pretty typical answer for me would be "I'm fine, you?" I am sure many people with chronic illness have a similar response.
But are we really fine?
The answer is probably not. For me, I rarely have a "good" day, despite how I may look (which is an entirely different topic that I previously addressed here). A "good" day is really just the best of the bad days. I live with constant pain (yes, every second of every day). I understand this can be difficult to comprehend as I don't typically show that I am in pain. I have become very good at hiding my discomfort and adapting to my baseline. I experience numerous joint dislocations, daily headaches, neurological symptoms, and debilitating fatigue. Some days I don't regulate my blood pressure and heart rate correctly and feel as though I am going to faint. I still struggle with nausea, vomiting, abdominal pain, and bloating with food and tube feeds. This is all part of my "normal." Everyday. For people living with chronic illness, perhaps we have convinced ourselves or accepted the fact that our "fine" is very different from a healthy person's definition of the word. But realistically, does all of that seem "fine?"
So why don't I just tell the truth about how I am doing? Sometimes I just don't want to talk about my health. I live with this reality everyday. I don't want/need to spend all of my energy talking about how I am feeling, especially given I have come to learn that most people really don't want to hear the truth. With or without chronic illness, it's used as a conversation starter and the expected response is "good," "fine," or "okay." Who wants to hear that someone is struggling or in pain?
And truthfully, people are so hung up on how a person "looks" that they have already made their own assumptions on how I am doing and usually ignore any attempts at explaining how I really feel. I cannot even begin to explain how many times I hear, "but you look so good," and when I try to explain that I don't feel as good as I look, I am met with either confusion or more comments about how I must be doing better because I look good. Just because someone doesn't look sick or disabled, doesn't mean that they aren't. Don't get me wrong...I want to look good. I just also want people to understand that the way I look doesn't necessarily correlate with how I actually feel. Yet the two seem to go hand in hand, and the concept of invisible illness seems impossible to understand for those who do not live with chronic health problems.
[Again, if you want to read more about invisible illness I wrote about that here].
Sure, there are those people (largely family and close friends) that genuinely want an update on how I am feeling; although, I am not always forthcoming with them either. Even family and friends don't really want to hear that you're not feeling well all the time...for a variety of reasons. For one, it's not a positive conversation and people tend to prefer when the mood is light. That's not to say that sharing my symptoms is being negative. It's not. Saying that I have a headache or pain is a fact. It's part of my reality. It's just not the positive and light discussion that most people are hoping for and often makes people sad/upset. It's also awkward and uncomfortable when someone is expecting you to answer with the normal, mainstream response of "good" and you hit them with your most recent symptoms or overwhelming list of daily struggles.
Because I do not like disappointing people or making people uncomfortable, I often just keep my answers short and sweet or throw in some sarcastic humor.
Well, I'm alive.
Hanging in there.
Same as always.
I'm fine.
...but the reality is very different.
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