Sometimes it is Lupus


May is Lupus Awareness Month, so here we go again. It’s time for those of us with a voice to take the time to communicate a little more with others, and help educate our friends, family, and acquaintances about this disease. Help out, whether you have Lupus or just know someone that does, and encourage more research both private and professional. There is a lot to learn.

So on that note… my dear friends, and Lupies at large… Do us all a tremendous favor and do NOT start posting memes and comments to others that they should “Google it!” I’ve seen a couple of those going around, and I find them extremely offensive. I’m not even the person they are directed at, and I find them offensive. How do you think the people that we are trying so hard to reach are made to feel when they see that? It’s dismissive, insulting, and irresponsible. I’m saying it now before I start seeing those posts left and right again, and I get really mad at someone. I’m saying it because it’s unnecessary, and it’s not what we’re about this month – or any other. This is our time to shine, ladies and gentlemen, so do it well. You have the whole world at your fingertips, and you are the ones living with this disease. It may be a good time to educate YOURSELF more about your own illness, if you aren’t able to come up with important facts to share directly with your friends. You might be the one that needs to “Google it”, huh? So.. if you don’t know what to post, fire up your search engine and look up the things that you know you want others to understand and look for ideas. Even if you just take a second to copy and paste a URL to a good article, that is a worthwhile effort. You don’t have to post 20 things a day. One a day, or every other day is fantastic. You’re already online. I see you. You’re on Facebook. You have the time. Do it.

Our responsibility is to not come off like an angry jerk. If you want people to be interested in what you live with, then be inviting and desirable to talk to. Offer to answer questions once in a while. Give people something specific to think about. Make an effort as well not to be the figurehead of doom and gloom while you’re at it. We want people to know that it can be a devastating disease, but we’re also not supposed to be in the business of scaring the crap out of the newly diagnosed and their families. The FACT is that there are ways to manage this disease – I know because I’m doing it. The REALITY is that we do not have an expiration date. Lupus is not a “terminal” disease, so stop acting like it is. Yes, people die from the complications sometimes, but nobody stamped you with a 5 or 10 year life limit like the ignorant medical ideals in ages past. At the same time we are educating those without Lupus, give those with it reasons for a hopeful life. All of this is important! Get to work!

T

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About Tala

-Livestream Broadcaster - Active in Periscope & Busker -YouTube, Twitter, Instagram, & Facebook Pages www.talanoexcuses.live Advocacy for better quality of life with catastrophic illness & injury. Conditions I live with myself are my awareness platform: rheumatic autoimmune & neurological, women's heart disease Traditional First Nations (Native American) -Training: Tai Ch'i Chuan, medical terminology, cultural Medicine -Avid about hiking, camping, & outdoor adventure Special Interests: Natural health, everything from East Indian to East Carolina cuisine, 16th Century German fencing Favorite Travel Spots: Yosemite, Catalina Island, E. North Carolina, Northern CA redwoods/coastal rainforest ~I live as naturally as I can, stay on a whole foods diet (as in what I eat, not as in "a diet"), avoid as many synthetic meds as I can, and do not consume artificial sweeteners and most preservatives. If you're curious about why, see my posts.~ Periscope/Twitter ID: Tala_NoExcuses https://badges.wegohealth.com/ha-awards-2016.js?referrer=Owb2x2Nb8L81mhJHyfwGcg

Posted on May 1, 2014, in General Blather, I Am That Wolf and tagged , , , , , , , , , , , , , , . Bookmark the permalink. 2 Comments.

  1. Great job, Tala. You are a great spokesperson for our common condition.

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