I believe in balance. Most of the time I’m pretty nice in the way that I talk to people – and if you don’t think I am, then you haven’t known me long enough. With that in mind, I’m about to get really blunt. Not mean, not rude, just extremely honest. Sometimes it’s necessary. Consider this the balance moment.
Illness and disability is not a competition. You have got to be off your dot to act like it is and be mad that someone else is getting more attention than you are. A celebrity got interviewed by a magazine for opening up about having Lupus. Boo hoo. Yes, it absolutely is courageous because it could affect their livelihood. When we all know that socially it affects us, because people stop asking us to go places and do things, what is there to be mad about in this? They assume we can’t, or we will say no, right? Right. A celebrity relies on image and popular opinion, so if they come out that they have a serious illness, what exactly do you think could happen? Instead of pissing and moaning that you are just as courageous as they are, why don’t you get off your whiny butt and prove it? It’s almost the end of 2015 and we all have the internet, cameras in our phones, access FREE OF CHARGE to YouTube, Facebook, Twitter, Instagram, and more! Use it and quit crying! Interview yourself if it means so much to you to be seen and heard. What exactly is it that you think those of us that are awareness activists have been doing all this time? Audiences are built over the long haul and it happens only because someone cared enough about everyone in their community to start speaking out. I am not doing any of this for some kind of image or for mySELF. I am doing this because we all collectively have a tremendous need for the realities of our illness to be recognized and properly understood. Without that we are never going to get the funding that is truly necessary directed into research. Do you want better treatments? I do. So get to it. Stop raving about how some celebrity is no better than you are. Here’s a thought… get your hind end in gear and go interview some OTHER people that are those ordinary patients that you’re always screaming should have a voice. If it’s really so important to you that some specific segment of our community get the spotlight, then YOU give it to them. If it’s not about you, then aim it at someone else that is just like you. Why do you think Mariposa Climes (one of my Facebook pages) features so many other people with disabilities, illness, and injuries? It’s not just about my personal goals. It’s about the purpose of that campaign. You have the same tools available as the rest of us.
In the mean time remember that these celebs are sick just like everyone else. They too need support. I am so over seeing messages posted about how “they have money, so they will be alright”. Money doesn’t cure Lupus. No, they are not alright. They are at the same risk for flares, damage, and death as you and I. Famous people die too. Famous people need to learn about their illness too. The one difference between us is that those famous people already have a following and can be a louder voice than any of us, and much faster and easier. If you don’t see the value of that then you need to just log off and shut down your computer because you don’t appreciate anything. The more spouting off you do, raging at them and everyone speaking about them, the less likely it is that we will have an advocate in them.
Show some respect for that human being. Show some compassion for THEIR pain too. Get over yourself. This no better than the “Why me?” wallow. Here’s your answer to that question that I’ll keep coming back to as many times as I have to. WHY NOT YOU?
Vulnerable, terminal, imperfect human. That’s what you are. Birth is a death sentence. Some of us just get there faster than others. What are you doing with the time you have between those two inevitable life events? Are you merely wallowing in self-pity over someone else getting the spotlight, or are you going to build a reputation that gives you a clear voice where it’s needed? You are also by potential powerful and capable of amazing accomplishments. Try leaning on those for a while instead. You are capable of so much more. “Somebody” should DO something, huh? Then do it.
Why not you?