What Lupus Actually Looks Like
Last updated: March 2023
Oftentimes people who do not have lupus think they know what lupus is. They may know a friend of a friend that has lupus. They base their view on just seeing what a lupus warrior chooses to show. Most of the time, their assumptions are so wrong. A jaded view is really what is seen until a lupus warrior explains what lupus actually looks like in their life.
What does lupus really look like?
Lupus will vary from person to person. But some things will be the same. Certain things are just a given for a lupus warrior.
Changing or canceling plans due to lupus
Because of the unpredictability of lupus. Every warrior will have those moments when they have to cancel plans at the last minute. It may be an event they have planned for months. Unfortunately, lupus will rear its ugly head, and plans will have to be changed and possibly canceled.
Feeling like a burden
When you are diagnosed with lupus, many things in your life change. One may be the issue of being unable to do something physically. It is no surprise that someone would feel like a burden due to the new chronic illness lifestyle. Constantly having to ask for help to do everyday things can stress caretakers. This plays on a warrior and can often make them feel like they ask too much.
Emotionally withdrawing due to lupus pain
One thing that is definitely the same in every lupus warrior is pain. That pain can take an emotional toll and can render a person helpless and hopeless. In addition, it can cause a person to withdraw from all that is seen as normal activities. Withdrawing often happens with extreme pain just to be able to handle and deal with it all.
Avoiding having to explain lupus
It is important to realize many do not know what lupus is. They may have heard of it, but they don't know or understand it. Especially when the person who says they have lupus looks well to them on the outside. Sometimes, due to explaining lupus and why they don't look "sick," a lupus warrior may isolate in social settings and stay away from larger gatherings.
Lupus and mental health
In the silence of their homes, there are lupus warriors having meltdowns. In the middle of the day or early in the morning, a lupus warrior has experienced just breaking down. The tears may flow in the shower, or patience may be short. In either case, the pain from lupus has pushed a warrior to the limit of cursing lupus out. The crying and meltdowns help to release emotions that may be bottled up for a long time.
With all of the pain that lupus brings emotionally, anyone can have bouts of anxiety, depression, and paranoia. It’s such a difficult disease to have to navigate a normal life through. There may be anxiety about the pain. Depression from the pain and paranoia due to the pain. It's difficult to get through those tough moments. In the long run, those issues can grow but never be seen by others.
Health fears with lupus
Through all the depression, paranoia and anxiety, there are always worries that health would get worse. The first thing to remember is that lupus is so unpredictable and can come out of nowhere. This causes stress and can ultimately cause flares. It’s hard to combat the worries, especially when flares and constant pain is present.
Lupus looks different for everyone
Finally, lupus is a person smiling through it all, so others don't worry. A lupus warrior is often trying to make it through the moment they are in. They don't want to seem like a hypochondriac and don't want to be judged. For this reason, many lupus warriors just smile through. Laugh through the pain and don’t allow others to see what lupus really is in their life.
In conclusion, what one sees on the outside of a lupus warrior is never usually the reality. Lupus is many things that are not shown. It can really take a toll on a person and their relationships with others and themselves. I believe it’s important that people know those with lupus are fighting a hard battle—a battle of things they will never see or understand. What lupus looks like is real and different for each individual. But patience and understanding are definitely needed.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?