Savannah Knudtson: Speaking up about lupus

You don’t have to look a certain way to be sick. I am a perfect example.

From the outside, you would never know I suffer debilitating symptoms that some days are so severe I can't get out of bed to care for my two children. Even with an amazing support system, I am still set apart by one autoimmune disease that has no cure: lupus.

My lupus symptoms affect everything I do on a daily basis. Like many others, I suffer overlap conditions. The pain from not only my lupus, but fibromyalgia can get so severe that all I can do is curl up into a ball and cry, not even able to stand my bed sheets touching me, unable to help when my children need love and affection.

At 25, I have been living with this disease for six years, but I am not just someone with lupus. I am a wife to my husband Brandon and a mom to two daughters, 5-year-old Codi and 2-year-old Chloe. I consider myself very fortunate to have a strong family support system. But not everyone is that lucky.

I want to show people that lupus is real and lupus is serious. I want the criticism and judgment to stop. People living with lupus are not trying to get attention or just being lazy. We are doing the best we can, fighting a daily battle you might not fully understand.

Knowing God has a plan for me helps me accept my situation, live every day to the fullest, enjoy every moment I am blessed with. It also helps me look at all the positives, instead of the negatives.

I want people suffering to live in a world where they don't have to be ashamed of their disease or have to suffer silently. That is the ultimate goal in everything I do. I want lupus to be a household name. When people hear it, I want them to know what it means.

I urge others suffering to stand with me, and start speaking up about lupus. I truly believe we can do great things in numbers. You are never alone.

Start by learning how to explain lupus to your friends and family and talk to them about the disease. Join a Walk to End Lupus Now™ event in your area or host a fundraiser to raise money and awareness for lupus research, education and advocacy programs. Become an e-advocate and share your story with your members of Congress. However you choose to speak out, the Lupus Foundation of America is here to help.