My name is Tiffany Marie and I’m a 24-year-old luscious lavender butterfly living in New York City! Recently diagnosed with Lupus SLE this past January 2010.
I can remember having lupus symptoms like joint pain and extreme fatigue as far back as six years ago. For many of us, lupus has always been a silent disease until that day we are struck with a severe flare up. The road has been rough, but I’m glad to finally know my health status after being in the dark about it for so many years!
One of the biggest challenges I have come across after being diagnosed with lupus was the attempt to share that knowledge and understanding with friends and family. How often have we been called “lazy, oblivious, slow,” and many other painful names because of the misunderstandings of others not comprehending our body and battles with lupus?
It may seem daunting at first, but I’ve found thee best way to tackle it after much trial and error.
The FIRST step is acceptance. We must accept the fact that we HAVE lupus before we can even think about explaining it to someone else. Having lupus is nothing to be ashamed of. The important thing is to embrace other fellow “lupies” to learn and grow stronger in fighting the constant battle of our health.
The SECOND step it to put aside some time to do your own lupus research. This year we have had some amazing breakthroughs and discoveries when it comes to lupus research in the medical field. It’s up to us to keep ourselves aware of thee latest happenings going on with our health. There are no dumb questions: If there is something you don’t know, just ask!
Here are a few of my favorite lupus research and informational websites:
And FINALLY step number three: Don’t get discouraged! Its common knowledge to most of us that the cause of lupus is still unknown and under much speculation, and yes we don’t have a cure yet, however the keyword is YET! These are all reasons to stand up, be STRONG, and fight so that one day we’ll have thee answers to all of our unanswered questions!
The feeling of being “alone” was something I constantly struggled with daily. I couldn’t help but feel like there was no one who knew how I felt. That feeling changed. After browsing through the internet on social networks like Facebook and Twitter, I found that there were so many other people all across the globe living with lupus just like me. My greatest discovery was an article written by Christine Miserandino, a fellow lupus warrior who found the perfect analogy of how to describe what it’s like to live with a chronic illness like Lupus. It’s called: The Spoon Theory.
I struggled for weeks with my mother; who wanted to understand my pain and what having Lupus felt like to me but couldn’t. I will never forget the day I introduced her to “The Spoon Theory.” Her tears flowed for hours because she was finally able to grasp a portion of what I experienced daily with lupus; while my own tears were from the gratification of finally being understood by someone I loved.
Tears may have been shed, but they were tears of joy for finally being able to share my life with Lupus and being understood. I wish each of you the best of luck on your lupus journeys. Just remember we’re in this together, and you’re NOT alone!
Tiffany Marie Peterson
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.