Look, listen, learn and lead…my life with lupus


Today marks my fourth year celebrating "World Lupus Day"! A day for sharing with the world exactly what lupus is and why it's important.

Lupus, also known as Systemic Lupus Erythematosus is an autoimmune disease in which the immune system turns against parts of the body it is designed to protect. This leads to inflammation and damage to various body tissues. (Adapted from lupusresearch.org)

This year there will be flash mobs, quirky informative shirts, and lupus sister meet-ups! However, this was not always the case for me.

 I first learned about lupus while sitting opposite my doctor four years ago. I had never heard of it before and suddenly it was the reason why my hair was falling out, bones were stiff and aching, and I could barely move an inch without head-splitting pain. In that moment my lupus diagnosis was a dark day. I had no idea what my future would hold. I spent countless days slowly sinking into a dark abyss feeling hopeless and utterly alone.

Then one day I found Twitter! (cue angelic singing voices)

Countless  others were "tweeting" away their lupus questions, aches, and pains. At first I just lurked around too timid to join the conversation. Slowly but surely it became a comforting community, which is often a lacking necessity to those living with lupus. Each voice inspired me to strive instead of just surviving and to create a place of positive thoughts to replace the negative ones. So, I began blogging my journey with the hope that those scouring the web for answers would stumble upon it and find hope. I just wanted to be a little ray of light in a dark place.

By sharing my story I hoped others would feel less lonely but in doing so I found friends I consider family. THIS is why sharing/spreading lupus awareness is so important: We should all know the symptoms.

Symptoms of lupus include: extreme fatigue, painful and swollen joints, fever, skin rashes, hair loss, anemia, kidney issues. (Adapted from lupusresearch.org)

Those who go undiagnosed in the land of chronic illness will have the information they need to prevent months of unanswered questions and frustration. Awareness helps increase knowledge so our caretakers and loved ones have a better understanding of what we're going through and how to help us. It also helps healthcare professionals and organizations know what lupus life is really like so they can create better outcomes for patients. The more voices that speak up, the better our chances of developing more options, skills for coping, and support groups.

So share information about lupus throughout your communities; if you aren't able to do it physically then get online and spread the word! You can join me in conversation on Facebook  www.Facebook.com/LupusChat or www.Facebook.com/AgainstLupus as well as on Twitter www.Twitter.com/Tiffanyandlupus

About our Guest Blogger

Award winning writer/blogger Tiffany Peterson is an ePatient champion for health and lupus awareness via the powers of social media. Through Twitter, Facebook and her blog, she is helping connect, educate and empower lupus patients and their supporters worldwide.