What It’s Like Being a Lupus Warrior
Last updated: April 2022
Many people may wonder what it is like being a lupus warrior. It’s kind of hard to explain, but let’s give it a try. Below is a list of things that a lupus warrior goes through. It will give you an idea of what it feels like to be a lupus warrior. People rarely understand the depth of dealing with lupus and its issues. They often assume what a lupus warrior should do, without even understanding what lupus is. Here it all is in a shortened format just for ease of understanding.
What it’s like being a lupus warrior
- Imagine living your life feeling like you have the flu ALL THE TIME.
- Picture yourself walking around with 40-lb dumbbells in your pocket weighing you down.
- You know how difficult it is to be scared or fearful. Now, Multiply those feeling by 100. Envision that feeling for yourself daily.
- At night, when you finally dose off to sleep, imagine pains in places you didn’t know existed waking you up in tears.
- Wake up with limited movement in your body from the pains all through the day and the night before.
- Imagine, because you can’t do the things you used to, feeling like a burden instead of a blessing.
- Stop and think about how people judge you because of a disease they know nothing about.
- Envision an emotional rollercoaster of fear, sadness, hopelessness and anger.
- Can you even fathom depending on medications to keep you alive? Think about how you would feel.
- Form a mental image of everyone misunderstanding you. Misunderstanding your lupus fight, your treatment and your totally changed life.
- Think of the moment you realize that lupus issues could possibly kill you.
- Visualize, just for a moment, being slapped by a frying pan with fatigue that sleep doesn't help with.
- Try to figure out how to live when your body is riddled with pain, you are emotionally drained and you can’t seem to get a hold of a nanosecond when lupus is not interjected into your day.
Lupus is exhausting
In conclusion, the above is a small idea of what it’s like being a lupus warrior. It can be exhausting trying to learn your body and figure out how to modify your life to fit your new normal. Lupus is a lifelong fight and until a cure is found, a lupus warrior’s fight will continue daily. No, every day is not difficult, but it’s important for people to understand a lupus warrior’s way of life has completely changed.
Lupus warriors are hopeful
Hopefully, those beating lupus daily worldwide, won’t have to explain how it feels to fight this difficult disease. Optimistically, one day, there will be a cure. Until then, try putting yourself in a lupus warrior’s shoes just for a moment to really understand what it’s like being a lupus warrior.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?