Lupus Awareness Month: Shining Light on a Dark Disease

May 09, 2016

Marisa Zeppieri-Caruana

U.S. News & World Report

May is an exciting time for me. For 31 days, I get to discuss all things lupus – a disease that changed the trajectory of my life 15 years ago. For those who are unfamiliar with the disease, how does a crash course in under a minute sound? Lupus is a chronic, inflammatory autoimmune disease that can damage any part of the body and has no cure. Simply put, in the body of a lupus patient, the immune system goes haywire and cannot stop attacking itself, usually in the form of damage to the skin, blood and organs. Symptoms vary, and it's often said that no two cases are alike, but some of the most common symptoms include fevers, rashes, hair loss, mouth ulcers, fatigue, pain and chest pain. When an organ is being directly affected by lupus, other symptoms can occur. Cases range from mild to fatal, and sadly, I have watched the illness take some of the most compassionate and kind people I have ever known. Today, approximately 5 million people worldwide are living with lupus.

While there is mystery and despair wrapped around this disease, Lupus Awareness Month offers all of us – patients, family members and friends – a bright light. It provides the perfect opportunity to begin a conversation and bring visibility to a disease that is often labeled invisible. One of the most common remarks I hear from other patients is because they look "healthy" on the outside, no one takes their illness seriously, or in some cases, refuses to believe they're ill. It's an issue I've wrestled with myself. In two separate periods of my life, it took becoming wheelchair-bound for more than a year during a nasty flare and then going through chemotherapy for certain people to finally accept that I have a health problem.

[See: 10 Lessons From Empowered Patients.]

Which leads me to the topic of disability binarism – the concept of all or nothing, that you are either healthy or disabled but you cannot possibly fit into a grey area (insert sarcastic tone on that last part). Lupus, like many other invisible illnesses, isn't black and white. It doesn't fit neatly into a box, and some patients will live their life on a nonstop roller-coaster ride of being abled and disabled, in a flare and in remission.

Disability binarism is one of the topics I will touch on throughout the month of May on, a nonprofit I started from my bed nine years ago. Unable to walk on my own or complete most activities of daily living, I hadn't lost the ability to type, and so the journey to spread awareness began. Over the years, I have found most patients I speak to live in this grey area of being disabled or able-bodied. During some seasons, they may need help 24 hours a day, while in other seasons they might be able to work full time.

I understand how this can be confusing or foreign to some people. Confusion I can deal with, because when we open a line of communication, I can answer your questions and hopefully enlighten you regarding the world of invisible disease. It's the judgements and uninformed assumptions made regarding those living in this grey area that can become dangerous. That is when I believe we begin traveling down a slippery slope. There is a great deal of truth in that old saying, "Don't judge a man until you've walked a mile in his shoes."

I have learned judgements and assumptions can be lessened the more we bring forth education and awareness about lupus and other invisible illnesses, which is the mission behind Lupus Awareness Month. If you know someone with lupus, maybe a co-worker or someone at your church, why not begin a conversation? Although some people prefer not to discuss their health issues (which is OK!), I have met hundreds of Lupus patients who welcome the opportunity to share their story.

peaking openly not only allows for an opportunity to educate but can also do something incredible – it can void and overrule the stigma and shame that often surrounds invisible disease. Becoming an advocate was honestly one of the best things I ever did for my physical and mental health; by speaking out, the feelings of shame and embarrassment from having a misunderstood disease had less and less power over me.

[See: The Most Common Patient Complaints.]

And so, here's to an entire month of speaking out and bringing awareness (although let's be real, I talk about lupus daily and probably drive my family nuts). What are your plans for Lupus Awareness Month? If you don't have any yet, consider signing up for a lupus walk near you, or wearing purple on May 20th – Put On Purple Day, courtesy of the Lupus Foundation of America (it's a great conversation starter). And, don't forget to visit me if you need more information, lupus resources or just some inspiration.

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