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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

How do I get my family and friends to understand i am not lazy, pretending nor exaggerating Lupus

A MyLupusTeam Member asked a question 💭
Oxford, MS
June 22
 · 
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Answer Summary

Members responded with deep empathy to the question of how to get loved ones to believe a Lupus diagnosis is real, with many sharing painful... Read more

Members responded with deep empathy to the question of how to get loved ones to believe a Lupus diagnosis is real, with many sharing painful stories of being called lazy, a hypochondriac, or accused of making up their illness even by close family and partners. A recurring theme was that many members eventually chose to stop seeking validation from others, focusing instead on their own well-being and mental health, with one member noting that letting go of others' opinions helped them significantly. Several members suggested leaning on the Lupus community for support and sharing group conversations with loved ones as a gentle way to help them better understand the disease.

MyLupusTeam

Getting loved ones to truly understand lupus can feel exhausting — especially when the illness is often invisible from the outside. You're definitely not alone in this struggle, and many MyLupusTeam members share the same frustration.

A few things that can help:

- Educate them directly — Share books, articles, or videos about Show Full Answer

Getting loved ones to truly understand lupus can feel exhausting — especially when the illness is often invisible from the outside. You're definitely not alone in this struggle, and many MyLupusTeam members share the same frustration.

A few things that can help:

- Educate them directly — Share books, articles, or videos about lupus so they can learn on their own time without it feeling like a lecture
- Be specific about your symptoms — Instead of saying "I feel bad," try explaining what's actually happening, like "my joints are so inflamed today that getting dressed took 30 minutes"
- Set gentle boundaries — If someone questions whether you're really sick, a calm response like "Lupus doesn't always show on the outside, but it affects my whole body" can shut down doubt without starting a fight
- Explain the unpredictability — Help them understand that lupus symptoms come and go, so feeling okay one day doesn't mean you were faking it the day before One MyLupusTeam member shared that buying educational books and a DVD about lupus for their family completely changed things — their family became their biggest support system after learning more about the condition.

It's also worth remembering that you don't owe anyone a full explanation. Share what feels right, and protect your energy for the people who are genuinely willing to listen. 💙

June 22
A MyLupusTeam Member

I can relate to all comments. I stopped trying to explain. I don't care what people think. I don't listen to advice from people who insist that I should do this or do that!! I just do what I can and I don't do what I can't. This helps with my mental and emotional wellness 😆

June 26
A MyLupusTeam Member

You have a doctor's diagnosis.That's all I should take

June 22
A MyLupusTeam Member

You are definitely right about all of that. You got to do what's best for yourself because like you said if you don't have these diseases they don't understand it. And I'm glad they don't so we just got to stay strong and do the best we can bless you

June 22
A MyLupusTeam Member

You don’t. If you don’t have Lupus, you will never understand what it’s like to live with it. Use this as an opportunity to improve yourself. Why does it matter if they accept it or not? I think we all go through it. Because of some of the stories in this group, I decided at the beginning I don’t care what people think and it helped me a lot. The worst was the father of my children who stated I made the disease up because he never heard of it before 🙄

June 22 (edited)

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