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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.

"I wish I could be at home doing whatever I feel like doing, just like you can Natasha!" No, I can't do what I want to do, I'm chronically

A MyLupusTeam Member asked a question 💭
Berlin Köpenick, DE

ill?! Anybody else heard these words or something similar like: "Why don't you go to work, you are a social parasite! Taxpayers are supporting you!" I usually answer I haven't asked for this. Anybody else had to deal with uneducated unreflected remarks?

February 22
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Answer Summary

Members rallied around someone facing hurtful comments about being chronically ill and not working, sharing their own experiences of being... Read more

Members rallied around someone facing hurtful comments about being chronically ill and not working, sharing their own experiences of being called lazy, attention-seeking, or a burden despite years of dedicated work before illness forced them into disability. Several members emphasized the importance of cutting toxic people from your life, educating those willing to learn, and seeking supportive communities like this one, with many pointing out that invisible illnesses like lupus make it nearly impossible for others to see the constant pain, fatigue, and loss of independence they endure daily. A recurring theme was refusing to internalize others' ignorance, advocating for systemic change in healthcare and social safety nets, and finding solidarity among fellow warriors who truly understand the reality of living with chronic illness.

A MyLupusTeam Member

People have no idea what kind of pain you're going through they don't understand it. That's why they have to educate their self on it. Because my son thinks he feels the same pain I do because he's in his fifties and he's old. I tell him there's no way you know what kind of pain I'm in so you have to educate your family

February 22
MyLupusTeam

How do you handle hurtful comments from people who don't understand living with lupus?

You're definitely not alone in dealing with these frustrating and hurtful remarks. Many MyLupusTeam members share similar experiences with people who don't understand the reality of living with a chronic illness.

The invisibility of lupus Show Full Answer

How do you handle hurtful comments from people who don't understand living with lupus?

You're definitely not alone in dealing with these frustrating and hurtful remarks. Many MyLupusTeam members share similar experiences with people who don't understand the reality of living with a chronic illness.

The invisibility of lupus symptoms often leads to misunderstandings. As one member pointed out, chronic pain and fatigue aren't always visible, which makes it hard for others to grasp what you're going through. People see you at home and assume you're relaxing, not understanding that you're managing a serious health condition.

Common unhelpful comments members hear include:
* "But you look fine"
* "You're too young to be sick"
* "Why do you sleep so much?"
* "It's not so bad"
* "Everyone gets tired sometimes"

Many members describe downplaying their symptoms to avoid burdening others or facing judgment. One member shared feeling the need to hide their condition at work, fearing being seen as weak or losing their job. Another mentioned rarely complaining to avoid concerning their parents. The isolation these comments create is real. Members frequently discuss feeling misunderstood and alone, with some noting that the illness itself causes isolation from the world.

Your response—that you didn't ask for this—is completely valid. Remember that you don't owe anyone an explanation, though having a brief, prepared response can help when you choose to address these comments. The important thing is protecting your energy and mental health while managing your condition.

February 22
A MyLupusTeam Member

Ignore these people. They have no idea what they are talking about.

February 23
A MyLupusTeam Member

Wow, thats horrible, people dont understsnds what we go through i was forced into disability at 42 right after my 1st stroke it was big, & i heard a lot from people. Believe me i . But i like thaf sticker i could use
A sticker like that especially living at thid facility i heard it all , that why ium treated different & dont get much say your 61 u shouldnt need help. So they think if im living here its because im
Lazy , so they dont want to help i must be lazy
But like my daughter says iff they new me they would know theres not a lazy bone in my body. I already dont ask for much Help i try to do everything myselfp

February 22
A MyLupusTeam Member

Wow I can't believe anyone would say something like this to anyone else. I'm sorry that happened to you. Who ever would say something like that is to me an obvious (I'll say this politely) ignorant human on many levels. I try to be as kind and patient with most people but not all deserve that kindness.

February 22

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