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Every year around this time you see all sorts of things posted on just about every social media platforms about Lupus awareness. And I think that is all good and well. But why do we do this just in May? I want to know what all these people who come out if the wood work in May, are doing the rest of the year to raise awareness. And while I understand many may be doing things behind the scenes and not on social media. Don’t get me wrong i am so super grateful for that. The thing that bothers me is that it’s not just May when we need to start raising awareness it is ALL YEAR LONG!

Those of us who suffer with lupus, or really any chronic condition, doesn’t suffer for just one month a year. And if there are people out there like that who do I want to meet them. I’m sure as you are reading this you are wondering where the heck I’m headed. My point today is simple, we can’t raise money and advocate one month out of the year and expect change. We can’t raise money and advocate one month a year and expect more research to be done. We can’t raise money and advocate one month a year and expect a CURE!!!

I know, raising money or advocating publicly is not for everyone and I’m

okay with that. I know not every person is going to have social media platforms where they can go to advocate, ask for support and money. And that to is okay with me. Some people don’t like their health issues to be known publicly and again that is fine with me. It’s not for everyone. Our differences and preferences are what make the world go round.

My problem stems from those who only spread awareness and advocate for their “life altering” condition during the month that is commonly used to spread awareness for their condition. While, yes raising money and awareness one month a year is better than never doing those things. I’ll give you that! It is the people who complain about the lack of new treatments or the current opioid issue that is impacting many chronically ill across the country and sit there and do nothing. They don’t do any research on ways to advocate, they don’t reach out to their city council or legislature. They just want to do nothing and expect great changes to come. Sadly, that’s not the way things work. If you aren’t happy with your treatment or the research being done for your condition you have to get out there and be proactive.

I know, some of you are thinking but Amber I can hardly get out of bed most days how on earth can I help spread awareness or raise money??

Well, that’s simple you have to do what you can from where you can. Meaning if you can’t get out of bed very often but you can use your phone, tablet or computer while in bed. That’s great, while you are in bed using said device email your city or state officials. Tell them your story and how you and your friends and families would be directly impacted by getting more more to spend on quality research. Or you are thinking, Amber I don’t feel comfortable sharing my story on social media, many of my close friends and family don’t even really know what is going on with me. Well, that’s your first step. Open up to your family and friends. Let them into your world and let them see what happens in your world on a daily, weekly, monthly basis! I know, we all have friends who wouldn’t give a flying flip if we told them what we are going through. But generally speaking we have more people in our lives who do care and who do want to know what’s going on than those who don’t.

Basically what I’m saying is START SOMEWHERE! The future will never change if we can’t openly share the present! The Lupus Foundation of America estimates that there are approximately 1.5 million Americans, and approximately 5 million people worldwide who have Lupus. Another site estimates that there are nearly 200,000 new cases of lupus annually. I chose to tell you this for one simple reason. If each of those five million people would spend one day every year spreading awareness and raising money for research just imagine the things that could be done. The new medical trials that could be running. We could really be working toward a cure.

Sadly, this isn’t happening and I and going to guess it never will! So what I really am saying is if you have the ability to help spread awareness of your condition, even if it’s just posting a silly meme on social media that doesn’t directly show what’s going on with you. DO IT! Tell one person you know that doesn’t know what’s going on in your life. Just spread the word. The more we can spread awareness of this debilitating disease the BETTER!! By doing this I hope that one day we will find a cure!!

**Remember these are MY feelings, not meant to upset anyone, just me sharing how I feel on this topic

With Love,


3 thoughts on “My Feelings About Raising Awareness

  1. I agree with you, Amber! Education and awareness needs to be year-round for all chronic illnesses and disabilities. I also like your advice, “You have to do what you can from where you can.” Thanks for sharing!

    1. Thank you as always for the kind words. I wasn’t sure how this one would be viewed. I figured it would make some feel uncomfortable and maybe a few mad. But I wanted to share how I really felt on the issue!

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