First, Know Your Lupus
There is a variety of apps that can help organize these concepts. Apps for lupus include The Lupus Companion and My Lupus Log, but there are also countless apps to help with lists and organization that may be useful.
Alternatively, an expanding file or a binder sectioned and labeled, a day-planner, a journal or notebook, and a hand-held recorder are also good to have on hand.
I also have a ‘lupus folder’ on my computer as well as in my internet browser’s bookmark list so I can save websites or documents that help me know my lupus personally. I listen to my doctors, but I do my own research because I know I cannot truly explain it if I do not understand it myself.
So for me, this is the very first step. Granted, the contents will change over time, but having this knowledge is absolutely essential if my intention is to share the truth of what I have and what it looks like for me personally.
Certainly, I know the basic description of lupus, and although that will suffice some of the time, it is not always good enough. Telling people all it can do is much different than telling people all it is doing. Accuracy and honesty is always a best practice!
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!
Next page: explaining lupus to friends.