Living with Lupus: MORE THINGS TO avoid

Here's the last thing on my current list of things to avoid.  But it's a biggie, so it gets its own post: 

 *Avoid thinking or talking about lupus (or an unrelenting symptom) every five minutes. 

This isn't easy, I know. When lupus symptoms are negatively impacting every aspect of your life - it makes it pretty hard not to bring up all the time. But I speak from experience. Doing so doesn't make it go away. It doesn't make it less significant or less disruptive. 

In fact, I'd say it makes it more problematic. 

Here's what I wrote on my blog more than 14 years ago: 

Oh, how I remember the constant (read: obsessive) visits to the bathroom to check the progress of my angioedema-ridden lips, a rash on my chest, or my swollen throat glands. It’s an awful feeling to know that your body is changing before your very eyes…and you can’t help but stay glued to a mirror so that you can track the transformation. I always thought it was helping my cause to visually monitor the progression…but you know what? My lips were going to swell whether I physically watched them double in size or not. It was out of my control, and the more I worried about it, the faster they’d swell (at least…that’s my opinion. I think my anxiety complicated the situation.) In fact, I found that the less I worried about them, the better. Once I realized that my lips were on their way to Botoxland, I’d make a pact with myself that I could only consult a mirror a certain number of times, like once an hour, or maybe two more times before bed. I did my best to take my mind off the swelling and that included visual confirmation. There was absolutely no benefit camping out in front of the mirror. It was bad karma, and it made me feel even worse about what was transpiring.

Don't let anxiety get in the way. Don't let it fuel the symptom. Don't let it take over. Don't allow it to make lupus (or, say, your swollen lip) bigger than it already is. 

Now listen - Yes, you need to mention your symptoms to your doctor. Yes, you should write them down in your symptom tracker. Yes, monitor them to make sure they're not getting worse every few hours or however often your doctor suggests. 

But no, don't check to see what the swelling/rash/hives/hair loss looks like every chance you get. Don't talk about it to anyone and everyone who will listen. Don't drive yourself (and possibly those around you) crazy becoming obsessed with your symptom. 

As I was talking to Deirdre the other night, I realized how this notion - allowing something to become bigger by constantly turning it over in your head - is so relevant during the teen years. Now it was time for me to pull from my years with lupus to help my sweet baby girl contain and shrink whatever was troubling her.


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