Fair warning. I like to give fair warning. If a post might seem long, or scatter-brained, or even if some of the topics or wording might seem offensive to some. I had no idea until just a few years ago that even the very discussion of illness is considered offensive to some. There are things called content warnings, and trigger warnings. I don’t really do that here. It would be great if the world were all cotton-candy and lollipops but it’s not. Unfortunately, in the real world there is potential for your feelings to get hurt. So I said all that to basically say this post might be long, and you can feel free to leave, I won’t be offended. So onward, and upward! 🙂
Anywho, This month , May, is Lupus Awareness Month. For those of you who follow my blog, you know that I have lupus, and have had for about 20 years now. I run a lupus support site on FaceBook called Lupus Sucks ! Lupus Support and Humor . I’ve run it about 5 years now, and have about 9,100 followers.
That’s not to toot my own horn , by any means . It’s really rather to toot the horns of the amazing people on my page. My BUDDIES I call them. They’re amazing. They rally around each other. They grant words of encouragement. They lift us up when we’re in the hospital , offering ways to get by when we’re having wretched stays in those most horrid of “Hiltons” 🙂 We’re able to help each other find doctors, share tips on what works best for exercises on already hurting bodies, and most of all , my favorite part , is find humor, yes, I said find humor in this crazy life that got chosen for us. By God , or the Universe, or Fate, or however you decide the great wheel of life chooses these things.
I’ve often told people if I hadn’t been able to laugh I’d have died a long time ago. I hope that I have been able to grant some small bit of that humor to someone else. It really is okay to laugh. I decided a long time ago , I was not going to let this crazy disease and all it comorbid compatriots to steal my joy.
Which got me to thinking about May being Lupus Awareness Month, and all the things that come with it. I’ve been trying to do research about Lupus Awareness Month. When it started, WHO started it? Why is it in the month of May? Why is our symbol the butterfly? WHO made these decisions? Was there a committee formed? Who was on the committee? Did the people on the committee have lupus? Who decided that purple was a good idea for our color ? Seeing as how this is the list of disease that use purple or some variant of it for THEIR awareness
Are we really using the MOST effective color in our push to get people to be aware of the disease we are affected with? I have been to many sites over the last couple of days , looking for ways to get flyers with info, or ideas for spreading awareness in even my very small town. They offered no ideas , or assistance. No free printable information.
So I guess, I’m confused. Confused and a bit angry.
To be perfectly honest, I’ve never been angry that I have lupus. I’ve always looked at it like I got dealt a lousy genetic stack of cards. I was never angry at God. I didn’t rail at Him , saying , “Why me? ” But I find myself feeling angry at the lack of support from these for lack of a better word “mega-corporations”. These are the people who are supposed to be backing us up. With ideas, with materials to make flyers, with community research . They are the people that are supposed to make things HAPPEN.
On that note, did anyone ask YOU , did YOU want the butterfly for the lupus symbol?
If you could choose an animal , what would you choose , and why?
Did anyone ask YOU , if May was the best month for Lupus Awareness Month for you?
If you could choose a month, which one would you choose , and why?
Did anyone ask YOU how you felt about purple as a representative color?
Would you have chosen a different color , and if so , which one?
Why are there NO (Non-Profit) materials geared towards the average “LUPIE” ?
What kinds of materials do you think would grab the attention of the public?
(Meaning ~ Female , between the ages of 15 and 44~ in other words , we’re young and cool not some doddering bunch of people in nursing homes )
We’d appreciate cooler , more age appropriate , materials geared toward that audience.
How do you best think we could attract the attention of the general public that we are trying to educate?
All that being said, I know we all have our struggles. With mobility, with being out in the sunlight, with fatigue, with emotional and stress issues. I know some of us have physical limitations which prevent us from getting out and dealing with the public. I know there are those of us who can’t speak on the phone, as it causes anxiety. I am not expecting anything to be done THIS May , but wondered if we might pool our ideas, and resources; creatively ( ideas, publishing , marketing) charitable, ( those with access to businesses who might help us with flyers, stickers , pins or buttons,etc. ) or simply working up a way to have it mentioned on a local news station. Please feel free to let me know any ideas that you have. And remember, our lupies are women between the ages of 15 to 44, but of course , the more people who are aware is even better.
I want so much to make a difference in the next year. And I BELIEVE that we CAN DO IT!! So maybe, just maybe it’s time WE