ICD-9-CM Diagnosis Code 710.9: unspecified diffuse connective tissue disease
What’s the deal, tumblr?
Anyone know why it keeps reposting my post about the “frightening” new pain pills? It’s important, but I don’t think my readers need to see it over and over again.
Why I’m Here
Restoring Quality of Life, the Partnership for Palliative Care's blog, is hosting a blog carnival. This post is in response to their question, “Why do you blog or share through social media about your illness?”
There are several things that motivate my decision to blog (and Tweet) about my illness.
My first motivation probably was to have a place to scream out some of my frustration without burdening* everyone around me. I was tired of being someone who was constantly complaining. The thing is, I needed to complain. Being sick is crappy, and it’s healthy to acknowledge that. I just didn’t want all of my relationships to become about nothing but my illness. I didn’t share the blog information with anyone initially. I had the opportunity to complain as loudly or frequently as I wanted without imposing on anyone. I could express my fears without passing them on to the people I love. This is less of an issue now. I have better information (so fewer fears), OK treatment (so somewhat less frustration), and an even broader support network.
Another motivation was community. It’s not easy to meet someone with UCTD in the real world, even though it’s not uncommon. We aren’t wearing signs or anything. It’s an invisible illness. Online, though, I had no problem finding people to connect with, both with UCTD, and with similar conditions. And they were all so welcoming. I’ve made some amazing, dear friends, and always have someone to share with who really “gets it.”
I also found inspiration reading the blogs and Tweets of these people. It’s great to hear it when someone with a condition like mine runs a 5K. Maybe I’ll be able to do that again some day. Or something else. It’s just good to see people being awesome despite their illnesses.
So, those would be the mostly selfish reasons for me to blog about my illness. Less selfishly, I am filling a need for others. When I Googled my condition, I found very limited information. That’s nuts. Google knows everything, and it’s not a rare condition. I share both information and my experiences on my blog for other people in that same position. It’s so rewarding when I see that someone found my blog by searching for our diagnosis.
I think the short answer to “Why do you blog or share through social media about your illness?” is that I feel like I’m doing something good with a bad situation. It’s lousy to be sick, but blogging has been a healthy way for me to express that, and find support, and provide support to others.
* If you’re someone I know in real life, you’re probably thinking that it’s no burden, and you’re happy to support me. Every one of you has been so unbelievably supportive, and I know I can tell you anything. (There’s probably another blog post there. I’ve met a lot of people with a variety of chronic conditions, and don’t think I know anyone who has received better support than I have. I’m so lucky to have you all!) Every time I’ve needed to complain to you, you’ve been there to listen. Thank you. Maybe burden isn’t the right word? I just want to keep a balance to our relationship, rather than have it be all about me being sick all the time.
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