A graduation cap sitting on a stack of books with a diploma, and a tassle showing a lupus butterfly charm on the end of it.

It's Difficult to Educate Others About Lupus

If you have been diagnosed with lupus, you may find that it is incredibly difficult to explain lupus to people. The general public hasn’t heard of the disease… even more, many people with some medical background don’t know much about the disease.

Lupus is a disease that presents differently in different people. So, to try to explain what the “common” symptoms or physical manifestations of the disease are would take a lot of time and patience.

Frustration when educating others about lupus

It can be frustrating trying to describe a disease that makes you feel a way that does not always have the words to fully capture it. Lupus is a complicated disease. Now, imagine having to explain this disease to others when you haven’t been diagnosed with it.

I have been in situations where I have had to explain what lupus is to friends, classmates, and even coworkers, and how it has impacted my mom’s life. I have been caught off guard with this task. Where do I start? What sort of picture am I painting here? I never want to share any information that my mom would not be comfortable with me sharing. Additionally, as a family, we have never been the type to solicit feelings of pity either. So I find the I have to be strategic, cautious, and intentional about how I explain lupus.

Where to begin

When beginning to explain lupus, I had to realize that the goal of explaining the disease is to bring awareness and provide enough information to allow others to begin informatively researching. I cannot explain how it feels to have the disease, as I do not have the disease. But I can explain how my mom has described it making her feel. People have misconceptions about the disease. So, the approach that I have taken is instead of trying to describe what lupus IS, to start with what lupus is NOT.

Lupus is not a contagious disease! There are a lot of theories about the causes of the disease, but there has not been one concrete cause yet identified. Lupus is also not related to HIV or AIDS, nor is lupus a form of cancer. One of the difficulties with this disease is that there are times where lupus can present symptoms that may resemble the physical symptoms of any of these other diseases.

After clearly articulating what lupus is not, only then can I begin to start discussing what lupus is.

Key points to include

Some key things that I include when discussing lupus:

  • Lupus is a chronic autoimmune condition. This disease makes the body’s immune system attack the body. The fact that it is a chronic disease means that once you have been diagnosed, the disease is one that persists. There is currently not a cure for this disease.
  • Lupus has many different types of symptoms, that present differently in different people. This makes diagnosing lupus very difficult, which can also make treating lupus even more difficult.
  • Lupus is a disease that does not necessarily have a set course of action. The symptoms can be incredibly sporadic. They can come and go at any time.
  • Lupus is a disease with many symptoms that can be both visible and invisible. With this disease having symptoms that are not always visible, people may appear as though everything is okay, when in reality they may be suffering a great deal of pain.

I have found that if the people that I am speaking with about lupus are genuinely interested in knowing more about the disease, these four points are a great place to start. They provide a solid foundation and focus on facts.

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