Wednesday, October 28, 2015

Chronically Ill and You See Us Smiling...

The thing about being chronically ill, is that sometimes you have good days. And you treasure those good days, and are so happy for them, and, of course, those are usually the days you feel up to seeing people. So what happens? People might notice that you're not at your best, but they see you smiling.

"Wow, you're holding up so well!"

"Wow, I'm amazed at how upbeat you are!"

Yes, I'm upbeat because I'm feeling well enough to see you. I'm so happy because I'm not dying of a headache or nausea or fatigue or any of the other symptoms chronic disease can bring. I'm thrilled and elated to sit up and see a face besides my own in the mirror, and actually talk with you, and think about something other than how miserable most of my days are.

You ask me how I'm doing, and I pause. This brings me out of the happy moment. I have to think about the truth. "Well... not so good... but I'm able to see you today, so that's good." I don't want to think about how bad it really is. I don't want to waste a moment of my precious time with you complaining.

Yeah, it's half faking, half ignoring. It's true that I'm better that day, and I'm so ecstatic to see you. That happiness is real. It's also true that I will probably pay for it tomorrow - but unless it lands me in the ER (which has happened three times in the past three months and makes me even more wary of doing anything) I will still consider it worth it.

If you read my blog, you see posts like this one and you get a better idea of the reality. You're still not getting the full picture though, because the blog has to stay reasonably upbeat to stay alive. I refuse to turn it into a dumping ground for negative emotions. That's not why you are here.

So when I write about my sickness, I try to have a point to it. My point today is: don't judge how a chronically ill person really is by what you see when you're with them. Unless you're living with them (or their parent), chances are even the negative news you're getting is only the tip of the iceberg. And this is all even more important to remember when someone is suffering from depression or anxiety, because you're already in a pretty trusted circle if you actually know they have it, but you probably still don't know how very bad it really is, unless you've gone through it yourself.

Ironically, I'm not writing this because I'm feeling judged - rather the opposite. I've been extremely blessed by how understanding my community has been. If there was an upside to the horrible migraine I had on my wedding day, it was that it put me visibly in the front of everyone when I was feeling at my very worst. It should have been the happiest day of my life, but I only got up that aisle with a lot of help (including both of my parents walking me down). Since that day I have seen a definite increase in sympathy and understanding, even from those who already had a pretty good idea of how bad my sick days could get.

Still, I want to acknowledge that I'm not always upbeat because people admire me for seeming that way all the time. In fact, there are a lot of days when I am the exact opposite of upbeat. I know that, over all, I do probably remain more positive than most chronically ill people, but that's not the full picture, and I know if this is the way it is for me, it probably is also true for a lot of others who aren't able to communicate this truth to those in their lives.

And remember, my health issues might be super hard, but if I am well enough to see you, than my smile and happiness are genuine, and your smile and presence will set me glowing, so that, for a few hours, I feel even better on an already good day.

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