Raising Awareness of Lupus
Prior to my diagnosis, back when the word “lupus” was just an unfamiliar, harmless jumble of letters, I found myself watching my very first lupus awareness commercial.
“Lupus: the disease with a thousand faces” flashed across my television screen and for the briefest moment, I was intrigued. A disease with a thousand faces? What does that even mean?
And then the flicker of curiosity was gone, lost as I switched the channel, unaware that my face would soon be counted among the millions of lupus sufferers around the world.
The commercial made me wonder, but ultimately, personal stakes draw you in. Cancer, arguably the most visible disease out there, touts the tagline, “Everyone knows someone with cancer.” It’s that personal connection, the stories and human faces that we can care about and relate to that create the best platform for disease awareness.
Lupus patients are of a lesser number, but still add up to an estimated five million people around the world — more than AIDS, cerebral palsy, multiple sclerosis, and cystic fibrosis combined. Knowing this, I wondered, “Then why do I feel so invisible?”
In fact, more often than not, my disease was invisible; inflammation wreaked havoc and caused pain on the inside, while leaving my outer appearance largely unchanged. Most of the people in my life had no idea they knew someone with lupus.
I wondered if I was doing enough to create awareness around the disease I was struggling with. Managing my disease was consuming all of my energy — why would I want lupus to take over more of my life than necessary?
Why Should I Play a Part in Raising Lupus Awareness?
The choice to promote awareness for the disease(s) you’re living with isn’t for everyone. Most often, but not always, those who do make this choice have had their illness for a number of years.
They’ve had the time to process and accept that they’ve entered into a life long process of understanding and managing their chronic illness. They’ve learned hard lessons from poor health decisions and would like to help others avoid their mistakes.
They’ve gathered a lot of useful information from their experiences with medication and health care providers, and want to share this knowledge with newly diagnosed lupus patients.
This expands into a desire to enlist others in the fight for a quality life for every person with lupus. Regardless of when a person starts to ponder the patient’s role in disease awareness, there tends to be three main reasons an individual chooses to engage in it:
- Personal validation: Having an invisible illness like lupus can be a mind game. People say you look well, when in reality, you are gravely ill. Your body tells you that yes, you are in physical pain, but each comment plants a seed of doubt. Sometimes, lupus symptoms can debilitate you for days and other times just for the morning, but not in the afternoon. People in your life are confused by the random nature of your illness and you constantly feel on the defensive. Spreading awareness is a way for you to validate your experiences and say, “Hey, it’s real, what I’m experiencing is legitimate!”
- Getting the personal support you need: By spreading awareness, you are also educating the people in your life. It exposes them to the facts and information that can help them understand your daily struggles and provide the support that you need.
- Getting public support for everyone with lupus: The moment you engage in the lupus community, whether it be online or within your local lupus support group, your lupus bubble is pierced. Suddenly, you see beyond your own symptoms and problems, and you want all of your fellow lupus warriors to get the support that they need. Spreading awareness in the public sphere ranges from general education, seeking donations for research, and enlisting others to share their stories.
Next page: what can one person do to make a difference?