Standing up for Lupus

“Hey! Anybody ever heard about Lupus?”

That is how I started my address on Lupus awareness at my youth club. This was followed by a few “yeses” but a lot of “huh’s” and “Heard of what?”

Lupus was discovered centuries ago yet so many persons are clueless as to what it is. It is therefore obvious that it is not up to the scientists, the doctors or even the Lupus foundations to promote lupus awareness constantly.

Lupus does not affect people once a year so awareness should not be limited to a month. Constant Lupus awareness is the “Official Lupie Responsibility”. There is nobody more capable or qualified to talk about Lupus than someone who is living with it. Everybody has a role to play. It is the role of the doctors and scientists to discover treatments and if possible, a cure. It is the role of Lupies to spread lupus awareness all the time, whether we work with a foundation or not.

The very nature of Lupus lies in its unpredictability. Lupus affects every person differently, so it is up to the Lupie to let the world know what it is to him/her.

Now, I am not suggesting that we all go out and start preaching about Lupus and pretend we know everything because that is not possible. We should read up on Lupus, study the findings and get an in depth understanding of what is really happening inside our bodies. It is after this that the most important part comes: Sharing our part of the story with the world.

When I discovered I had Lupus, I did not want everybody to know. I did not want to be treated with pity or differently. I wanted to be normal (hilarious, I know!). A war was raging within my body. It was an internal thing, an invisible thing… and I wanted it to stay that way. (That was of course, before I understood that this thing was going to affect every aspect of my life).

Then I realised that was the reason so many persons died from Lupus. As I was at first, too many of us are living selfishly. This is not about “us”.

This is not something we should just keep to ourselves. This is something we should educate people about, for the purpose of saving lives.

We can save the lives of the persons who are misdiagnosed and those who have not yet been diagnosed. We can save the lives of future Lupies. Early diagnosis equals longer life… or a life. We can heal the broken spirits of Lupies who are being treated and persons with other diseases or other situations in their lives. We can remind them that we are all soldiers in this war and we are fighting together.

At my youth club, among the many questions asked was one pertaining to us being susceptible to other diseases because our immune systems have to be suppressed. This gave birth to a discussion about germs. The discussion entailed how easily germs are passed from person to person, how dangerous it can be and how to limit the spreading of germs, being mindful that persons might die from the “little” infections that can result.

After learning about how dangerous germs can be for someone who has Lupus, if one person, decides to cover his / her mouth instead of sneezing or coughing, near or on someone (who might just happen to be someone with have Lupus), just may save a life.

Though some of us are already standing up for Lupus, compared to the size of the Lupus population, we are few in number. We are all the voices of Lupus. Let us speak. Speak for the persons who have died without knowing that they had Lupus and for those who died fighting, knowing that they did.

Let us speak for the misdiagnosed and the ones who have not yet been diagnosed. Most importantly, let us speak for the Lupies who cannot speak. Let us speak for the generation to come.

Knowledge is power. Let is give people the power to fight back…. This is our duty.

Shoyea-Gaye Grant
Jamaica, West indies.