Friday, December 20, 2013

Informed, but filtered: Using the internet to HELP your lupus, not hurt it!

A few months back, my girlfriend went into a doctor's appointment. The doctor asked her how things were going, she said not so well, and the doctor asked what had been happening. My girlfriend replied, "For starters, I googled too far."

We've all been there - you begin by innocently searching on the web for an answer to a health question. Maybe it's about lupus hair loss, or pregnancy with a chronic illness, or how long steroid withdrawal is supposed to last, but before you know it, you've found yourself reading about terrible health catastrophes that are of no interest (and may not even be relevant) to you. But now you've taken in the information, and you're left to process it. Ugh!

I've found the internet to be a very tricky tool when it comes to managing and learning about lupus. I find the most success when I limit myself: I do a quick search on the subject in question, I read just a few snippets from websites that I know and love (www.mayoclinic.com, www.lupus.org, www.WebMD.com), and that's it. If I've found the answer to my question, I stop reading. If I'm satisfied with the information I've found, even if it doesn't directly answer my question, I stop reading. (I can always follow up with my doctor to clarify.) In fact, even if I DO find the answer to my question, I still follow up with my doctor. The information online, while accurate in general terms, may not apply to my particular case of lupus, and it may not be the right fit for my situation. So I always let my doctor weigh in to help me decipher the facts.

I also try to stay very aware of how I'm reacting to what I'm reading. If I find myself getting physically uncomfortable as I read, I stop. If I find myself thinking or saying out loud, "What? Really?", it's usually time to stop. If I feel a familiar lump in my throat, or start to tear up, I definitely stop. I'm really the only judge of what is or isn't too much. Some days, it's ALL too much. Other days, I can take it. I'm sure this blog can be too much sometimes. Maybe it's too much to read that day, or that month. If that's the case, stop reading, walk away, and come back when you're ready. I'll always be here, ideally with a little hope to spread.

Lastly, I NEVER, and I mean NEVER look at real-life medical pictures. I actually scroll down so I can't see them, or I put my hand over the screen so they're covered. If I want to see what a lupus rash looks like, or a bad case of angioedema, I can just check out old pictures of myself from ER visits past. The pictures are just too much for me - so I don't look. Easy enough to avoid.

So be sure to filter while you surf, being sure to choose sites that offer accurate, objective information. If someone's ranting, you might want to skip it. If someone other than a doctor or medical site is offering medical advice, skip it. If someone is telling you to skip or alter your medication, or stray from your specific doctor's orders, I'd recommend finding another resource. And if it's something that's too much for you to read at the moment, take a breather. That's the BEST thing you can do for your disease activity!

Safe and happy surfing!

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