First, Know Your Lupus
When I was first diagnosed, my immediate family experienced the discovery with me. As I learned new things, I would pass it on. Because of this, my need to truly explain it to those closest to me was not really a necessity.
However, as time went on and more symptoms and complications presented themselves, I found that I needed to expand the awareness to those beyond my immediate family.
I was a school teacher at the time and because I found myself under the weather more frequently, it became necessary to share what was going on with my colleagues, administration, and students.
I also became aware of the fact that very few of my extended family knew what I was going through, and it became serious enough that I felt the need to also reveal my condition to those who cared about me, but were not present in my everyday life.
Explaining Lupus to Family
The first thing I did was write a family letter. I went back to the beginning and shared my timeline of discovery as concisely as I could.
It was a bit overwhelming, but I was able to mold my illness in this form so that it was clearly explained with the most important details, without just spitting it out.
By the time I shared the letter, it was well written and easy to follow. I wrote it much like a story and included humor where I could so that the information wasn’t too heavy or doom and gloom.
I shared a link to The Lupus Foundation of America as their website is full of information, details, and descriptions. By directing them to an official site, much of the explanation was done for me.
Certainly, I shared which organs were involved in my particular case so that they could explore those areas without having to pick through the information to determine what was relevant to me. This was a huge help!
I was open and honest and suggested they ask me any questions they had. I did not want them to feel uncomfortable or see me as a fragile sick person.
My family was receptive and since sharing the initial information, I continue to offer updates through e-mail. I also started a blog, which allows my family — as well as others — to follow along with my journey without me needing to constantly update them with details.