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What Advice Not to Give Lupus Warriors

I've been living with lupus for over 19 years now, and I've heard a lot of unsolicited advice from well-meaning people. Some of it has been helpful, but a lot of it has been downright offensive.

Here are a few pieces of advice that I wish people would stop giving lupus warriors:

Unsolicited advice

1. "You look so good!"

I know you mean well, but this comment can be really hurtful. Lupus is a chronic illness, and it can take a toll on my physical appearance. I may have weight fluctuations, hair loss, or a rash. When you tell me I look good, it's like you're saying that my lupus isn't that bad. It hurts to have to constantly explain to others that I don’t look how I feel.

2. "You're so strong!"

I am strong, but honestly, it’s hard living with lupus. Sometimes, I just don’t always feel strong. I have good days and bad days. I'm not always able to do everything I want to do. When you tell me I'm strong, it's like you're saying that I should be able to handle anything. Listen, I’m not superhuman and sometimes my strength needs a break too.

3. "You just need to think positive!"

Hey, I know that positive thinking can be helpful. I live by speaking life and power over myself. But it's not a cure for lupus. Speaking positively is important, but that doesn't mean my lupus will go away. In fact, sometimes positive thinking can make my lupus symptoms worse. I am all for being positive, but I will never do so in a toxic way.

4. "Have you tried (insert alternative therapy here)?"

Absolutely, I've tried a lot of alternative therapies. Unfortunately, none of them have worked for me. However, I do know that some people find relief with alternative therapies. It's important to remember that they're not a substitute for conventional medicine. Although, alternative therapies can be a great addition for a holistic approach. Consequently, many alternative therapies can interact with my immune system and make my symptoms worse.

5. "I know someone who has lupus, and they're doing great!"

I get this a lot. I'm glad that your friend is doing well. It warms my heart to know there are warriors out there able to feel good daily. However, the reality is everyone's experience with lupus is different. Just because someone else is doing well doesn't mean that I am doing well. It takes time to get the right treatment to keep lupus at bay.

6. "You're going to be fine!"

I have no doubt that I will be okay. But it is scary to think that I may have some issues that can’t be solved along the way. In those moments, I don't know if I'm going to be fine. Furthermore, lupus is an unpredictable disease. I could have a flare up at any time. Additionally, it's important for me to be realistic about my condition and to prepare for the possibility of a flare up that may not clear up. I try hard not to live pain to pain.

7. "You're just making it up!"

I wish I was making this up. But I'm not. I have a real disease that causes me real pain and some serious issues. It's not something I can just wish or pray away. When anyone says things like this to me, I really shut down. I don’t want to talk to someone who is bent on misunderstanding my lupus.

8. "You're too young to have lupus!"

Lupus can affect people of all ages. I was diagnosed with lupus when I was in my middle 30s. Most importantly, I was still very active, and it was a blow to my ego. Having a young child and trying to navigate a new lupus diagnosis was hard. It's not fair I'm too young, is what I felt often, but it's the reality of my life.

9. "You're going to die from lupus!"

This is such an ignorant statement for me. First, why would you utter these words to someone in the fight of their life? Second, I know that lupus is a serious disease. It is not a death sentence. I'm taking my medication and managing my condition as best I can. I'm hopeful that I'll be able to live a long and healthy life. Until a cure is found, I will continue to thrive in spite of lupus. At the same time, I hope issues from lupus will not take me out for the count.

10. "You're not a real warrior!"

I am a warrior! I'm fighting battles no one sees every single day. Therefore, I’m not giving up! I may be knocked down from time to time, but I’ll still get up. I'm going to keep fighting as long as I can. I will continue to do the things that help me thrive in spite of lupus. This makes me a warrior and a thriver.

All I need

These are just a few things I have heard over the years on my lupus journey. I know that people mean well when they give me unsolicited advice. But sometimes, the best thing they can do is just listen. If you're not sure what to say, you can choose not to say anything at all. Or you can say, "I'm here for you." Sometimes that's all I need.

I hope some light has been shed on what advice NOT to give lupus warriors. If you have a friend or loved one with lupus, please be mindful of the words you choose. A few well-intentioned words can make a big difference.

What type of advice has been given to you on your lupus journey that just don't help? Let me know in the comments.

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