Explaining Lupus to Family, Friends, Colleagues, Children and Acquaintances
I know we’ve all heard it — those five little words of no more than three or four letters each: "But you don't look sick."
Lupus is one of those “invisible” illnesses. Most of the damage caused by this mysterious, chronic illness is internal.
Certainly, there are external signs at times — lupus hair loss, instability, skin rashes, and in my case, the constant companion of an oxygen tank. However, this external damage is only a fraction of what is really going on inside.
As a result, explaining lupus is not an easy task. I know that if I share all of the symptoms and complications I have, many people will think I’m exaggerating — especially if it is thrown out there haphazardly or in a disorganized fashion.
I have felt judged on more than one occasion because so many of my problems cannot be seen from the outside. I’m sure we have all experienced that at one time or another — but it doesn’t change the reality of what lupus is and what lupus does.
The support of others — and their acceptance — is something we all need.
I can recall several instances when I have matter-of-factly told people of my condition only to discover that they have never heard of lupus. And those that have heard of it often do not understand it.
Lupus is not easy to define. There is no clear-cut description of what it is or what it does because it can attack so many different body systems that no two people have the exact same lupus.
It has many different faces and presents itself in many different ways. It continues to evolve and change. It seems that once I get a handle on it, something new pops up.
Honestly, one of my biggest fears is that people will think I’m shopping for sympathy or pity-seeking. This is simply not the case. But, I do want people to understand because it affects what I am able to do.
My abilities can change on a daily basis — good days, bad days, really bad days, times when I’m flaring on maximum overdrive and times when I almost seem ‘normal’ (if there is such a thing).
I have found myself needing to explain lupus in a variety of settings: with family and friends, to my third grade students, and even in social or professional situations. Each explanation may look different depending on who the audience is, what they need to know, and why they need to know it.
I would like to share what it might look like in each of these scenarios. It’s never easy, but with a plan of action tailored to fit a variety of circumstances we can be prepared to explain our individual lupus accurately, concisely, and authentically.
First, Know Your Lupus
For me, one of the most important factors is knowing MY lupus personally. Just as if I were getting to know a new friend, I want to be aware and understand the many character traits that my lupus has.
I keep information, lists, and records regarding dates, symptoms, complications, damage, treatments, medications, side effects, doctors, specialists, hospitalizations, procedures, limitations, improvements, and victories. I also take photographs of visual symptoms just in case I need them.
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!