Lupus is a challenging and complicated condition to live with, which makes sense why it would be difficult to explain when someone asks you about it. Giving a straightforward and honest answer may seem like the most logical thing to do; however, beneath your response, there could be a lot of feelings that can make you possibly go into fight, fight, freeze, or fawn mode, especially if you are put on the spot.
In this blog, I will share with you what I say when people ask ME, “What is lupus?” I will explain why I have thoughtfully and carefully curated this response from many years of living with SLE.
When I have been asked the question,
“How do I explain what lupus is to someone when they ask?”
My response is to first breathe, because I understand how stressful it can be. I know the fears and concerns:
I don’t know how much information to give...
I don’t want to scare people...
I don’t want to downplay it...
I want them to take my disease seriously...
I don't know how many personal details to give...
I don't want to share personal details of my health...
I don't know what is important to say...
The list goes on and on, and so does the stress of trying to curate the perfect response.
So, let's work through all of this together.
Subject A:
"Lupus. I think I have heard the word, but I don’t really know much about it. What is it?"
My response:
“Lupus is a chronic inflammatory autoimmune condition that causes the immune system (your body's natural defense system) to attack healthy cells by mistake. When that happens, it can cause pain and fatigue from inflammation. If the inflammation is not kept in check, it can cause tissue damage, leading to organ failure and even early mortality. There is no cure, and I have to take a lot of medications to treat it.”
There it is. At first, that may seem like a mouthful, but once you get the cadence down, it will roll off the tongue. It only takes about 4-5 seconds to say. In that time, you have covered a concise yet enormous amount of information.
Let’s break it down into three sections.
PART ONE:
"Lupus is a chronic inflammatory autoimmune condition that causes the immune system (your body's natural defense system) to attack healthy cells by mistake."
Why this is important to say:
Right off the bat, you are telling them this is not temporary. This is not a broken bone or a ruptured appendix. There is no resolution. You can’t just get over it. It is a chronic condition.
Another significant point in this section is that lupus is an “inflammatory autoimmune” condition. Thankfully, most people know what inflammatory means. Over the years, I have chosen to put that before autoimmune because some might hear “autoimmune” and instantly think you have an infectious disease like AIDS. It's good to just bring clarity right off the bat. Lastly, if they don’t know what “autoimmune” means, this is a simple and easy-to-follow description of how the body's natural defense system and the overactive response of lupus work.
PART TWO:
"When that happens, it can cause pain and fatigue from inflammation. If the inflammation is not kept in check, it can cause tissue damage, which can lead to organ failure and even early mortality."
Why this is important to say:
This section is beneficial because it introduces them to the disease process and some of the most common symptoms. Also, take note that I say, "When that happens," not "If." That one word brings a subtle yet intentional seriousness to your symptoms.
Additionally, at some point, someone will ask you, "How does lupus make you feel?" This response is a clear way to sum it up. The top two symptoms right off the bat are pain and fatigue. Obviously, WE know lupus causes a heck of more symptoms than that, but people generally won't remember them. Trust me.
The last sentence explains how and why we have those symptoms. Ending with a purposeful truth bomb about the inflammation in your body that causes a plethora of problems and, yes, even death if not treated in a timely and appropriate manner can be scary to say. Which is why this section may be the hardest. You are talking about hard things. But as Brene Brown says, remember, "Being clear is being kind." You are not trying to be "Debbie Downer," but you are trying to be Debbie Direct.
PART THREE:
"There is no cure, and I have to take a lot of medications to treat it.”
Why this is important to say:
It is important to end the way you started to bring the point home that lupus is a chronic-on-going condition, and there is no smoothie, herbal supplement, yoga pose, diet, or self-help book that will make it go away.
Sidenote: If the person or people you are speaking to interject with, “My friend had lupus, and it went away after they did this… (fill in snake oil remedy here).” Chances are, either they didn’t have lupus in the first place, or they are currently in remission, not cured. Which are both wonderful! But it is entirely anecdotal information and not helpful to you, who isn't asking to be fixed. Only asking to be heard.
Okay, back to this last section. This is important. I want to prepare you for something. Mentioning medications can be a tricky thing. On the one hand, people need to know! Because, let's be honest, the only reason you are most likely able to function and be a part of the "land of the living" is because you are highly medicated at all times (or at least I am, lol). This sentence adds yet another level of seriousness to the conversation. Why is this important? Because we are often told, "We don’t look sick." Many lupus symptoms are not visible to others, so people can dismiss the severity of your disease. Spreading awareness about the immunosuppressive or steroid therapy you have received may just be boost of information that a person needs to rise above layers of misconceptions regarding your illness.
However, when I don't feel I am in a headspace to respond, here is my follow-up response:
"You know, I talk about lupus a lot. And sometimes, I just get so sick of it. Maybe we can get coffee sometime and go over my medication manifesto.”
See what I did there? I put a boundary up in a nice way, using light-hearted language and even humor.
So, there you go. I hope that this is helpful. Will this work for everyone? Probably not. Will people forget what you told them? Probably yes. Will you have to say it more than once to some people? Undoubtedly, yes. But at least you know you are telling your truth, being honest, spreading awareness, and being open in a safe way. That’s all you can do.
If people dismiss or don’t listen, that’s on them. They asked and you answered to the best of your ability. If they didn't want to know, they should have asked about the weather :)
Written By:
Kelli (Casas) Roseta
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2023.
September 2023