I Say "I’m Fine"… but I'm Probably Not.
You will often hear people with IBD saying, "I'm fine," "I'm OK," or even, "I'm good." But are we really fine, OK, or good? And what are some of the reasons that those of us with ulcerative colitis or Crohn's might just go down the route of saying we're OK – even when we're not?
I'm fine, for me
Sometimes, we might simply mean that we are doing OK, by our standards. Our "doing fine" baseline is likely to be different to a healthy person's baseline. We may have a level of pain or fatigue that we tolerate on daily basis. A healthy person with the same level of pain or fatigue would think it was worth a mention.
For me, pain, multiple toilet trips (I have no colon and an ostomy now), and chronic fatigue are my everyday life. This is the best I am going to get. So yes, I'm not feeling fabulous by any standards, but I am feeling no more rubbish than usual. I have learnt to function with it, and now it is my normal.
Nothing has changed
It can feel like there's no point in saying how we actually are because it's not changed since the time before. We might have seen the person who's asking multiple times, and been in the same health. We don't want to bore them with it again! There’s also often a fear of being thought of as the "moaner" of the group. A bit of a Debbie Downer. Saying we are fine can seem easier.
It can be difficult for people to understand that we generally don’t feel "good," or that a flare can last a long time, whilst we try different medications and wait for them to improve our symptoms. Some treatments can take up to 3 months to begin being effective, and even then, might not help. If you have to try another because the first didn’t help, you’re looking at up to 6 months before seeing improvement. Then what if that doesn’t help either?!
They don't really want to know about my ulcerative colitis
Then there are the days where "I'm fine" really means, I feel like you're bored of hearing it. We don’t feel like the person that asked really wants to know the answer. Or like you’re only being asked out of habit, or because they're waiting for you to ask how they are.
I have genuinely seen people’s eyes glaze over as I’m telling them how I am. They were not really listening. Maybe it's because they've heard it before? Or maybe because they are just waiting for their cue to tell me about themselves. I have tested the theory in the past. Most messages start with "Hey, how are you?" Then follows what the person actually messaged for. I noticed that not replying to the "How are you?" usually went unnoticed. It was simply there as part of the greeting, out of habit. It was not an actual enquiry into how I am.
I have learnt from this, and unless I actually want to know how someone is, I don't ask the question.
I don't want to talk about my symptoms
Other times, we just want to pretend we are fine, to ourselves, and to everyone else. It can be difficult to keep repeating that things aren’t any better. That we constantly feel pain.
For me, there's even an element of feeling like saying it out loud makes it more real. More tangible. And ignoring it and carrying on like everything is fine might actually make it so.
So, there are many reasons we might be saying we're fine, but the chances are, we often aren't.
How open are you about being diagnosed with IBD?