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Q&A Forum: What NOT To Say To Lupus Warriors

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“Oh, you don’t look sick!” or “It could be so much worse!”

Many Lupus Warriors have had similar experiences when it comes to communication. Society often doesn’t realize the impact certain comments can have on people with lupus.

For this month’s LupusCorner Q&A Forum, we asked our contributors to share their personal experiences regarding uncomfortable social situations and share comments that made them feel dismissed, hurt, or misunderstood. Check it out!

humid

Anonymous Lupus Warrior

Often the intention can be good, but many people don’t understand how hurtful certain comments can be. What is something you’ve been told that has made you uncomfortable or hurt?

If you would just get up, and get out. You would feel better.

The topic of medication can be a sore subject for many Lupus Warriors, too. Research also shows that many people that battle a chronic illness must also battle a mental health condition (such as depression or anxiety). Has the topic of medication ever been an issue for you with friends or family?

Yes.

If yes, what have people said to you about your use of medication for lupus?

That’s a lot of medicine. Maybe, that’s why you feel so bad.

“It could be worse.” Reminding people with lupus that things ‘could be worse’ can sting, and can be quite dismissive of the struggles Lupus Warriors face. Have you ever been in a social situation that made you feel dismissed?

Yes. When I had my hip replaced. And I was hurting. The nurse said, “Be thankful, you could have no legs”.
diabetes

Tim McGowan

Often the intention can be good, but many people don’t understand how hurtful certain comments can be. What is something you’ve been told that has made you uncomfortable or hurt?

People think because I look okay they can’t understand why I have pain and fatigue.

The topic of medication can be a sore subject for many Lupus Warriors, too. Research also shows that many people that battle a chronic illness must also battle a mental health condition (such as depression or anxiety). Has the topic of medication ever been an issue for you with friends or family?

Yes.

If yes, what have people said to you about your use of medication for lupus?

You take too many meds.

“It could be worse.” Reminding people with lupus that things ‘could be worse’ can sting, and can be quite dismissive of the struggles Lupus Warriors face. Have you ever been in a social situation that made you feel dismissed?

Yes.

lupus

Warrior Lois

Often the intention can be good, but many people don’t understand how hurtful certain comments can be. What is something you’ve been told that has made you uncomfortable or hurt?

You just were in the hospital? Why? You look fine!!

The topic of medication can be a sore subject for many Lupus Warriors, too. Research also shows that many people that battle a chronic illness must also battle a mental health condition (such as depression or anxiety). Has the topic of medication ever been an issue for you with friends or family?

Yes.

If yes, what have people said to you about your use of medication for lupus?

You take too many pills.

“It could be worse.” Reminding people with lupus that things ‘could be worse’ can sting, and can be quite dismissive of the struggles Lupus Warriors face. Have you ever been in a social situation that made you feel dismissed?

Oh look at so and so, she’s back on her feet while you are still in a wheelchair, cane, rollator. You should do what she’s doing.

diabetes

Niecie

Often the intention can be good, but many people don’t understand how hurtful certain comments can be. What is something you’ve been told that has made you uncomfortable or hurt?

“Oh yeah, I had that same pain back years ago and then it went away! Wait till you get old. I have a pain right now in my blah, blah, blah….”

The topic of medication can be a sore subject for many Lupus Warriors, too. Research also shows that many people that battle a chronic illness must also battle a mental health condition (such as depression or anxiety). Has the topic of medication ever been an issue for you with friends or family?

Yes.

“It could be worse.” Reminding people with lupus that things ‘could be worse’ can sting, and can be quite dismissive of the struggles Lupus Warriors face. Have you ever been in a social situation that made you feel dismissed?

Oh yes… I’ve been told that at least I don’t have cancer.
lupus

23 Mert

Often the intention can be good, but many people don’t understand how hurtful certain comments can be. What is something you’ve been told that has made you uncomfortable or hurt?

When I park /if I do in a handicap place I have a plate to, (if I feel good I don’t I walk leave it for someone else) but when I do park, they say nothing wrong with you, you shouldn’t park there! Etc.

The topic of medication can be a sore subject for many Lupus Warriors, too. Research also shows that many people that battle a chronic illness must also battle a mental health condition (such as depression or anxiety). Has the topic of medication ever been an issue for you with friends or family?

No.

If yes, what have people said to you about your use of medication for lupus?

Not an issue/family don’t know what all i take only a couple select few.

“It could be worse.” Reminding people with lupus that things ‘could be worse’ can sting, and can be quite dismissive of the struggles Lupus Warriors face. Have you ever been in a social situation that made you feel dismissed?

YES! Certain family members but i seem to ignore them after having lupus over 20 years i have come across all kinds. Realize you can’t fix ? There needs to be more out reach on what lupus is etc. Many people in smaller areas has no idea what it is.
diabetes

Jasrene

Often the intention can be good, but many people don’t understand how hurtful certain comments can be. What is something you’ve been told that has made you uncomfortable or hurt?

You look ok to me.

The topic of medication can be a sore subject for many Lupus Warriors, too. Research also shows that many people that battle a chronic illness must also battle a mental health condition (such as depression or anxiety). Has the topic of medication ever been an issue for you with friends or family?

Yes.

If yes, what have people said to you about your use of medication for lupus?

So you need to take it for life??

“It could be worse.” Reminding people with lupus that things ‘could be worse’ can sting, and can be quite dismissive of the struggles Lupus Warriors face. Have you ever been in a social situation that made you feel dismissed?

There are many people who are much worse than you.
hospital

Anonymous Lupus Warrior

Often the intention can be good, but many people don’t understand how hurtful certain comments can be. What is something you’ve been told that has made you uncomfortable or hurt?

I believe that most pain is actually from being anxious about the pain and if it will ever go away. Even though they were talking about themselves it was hurtful.

The topic of medication can be a sore subject for many Lupus Warriors, too. Research also shows that many people that battle a chronic illness must also battle a mental health condition (such as depression or anxiety). Has the topic of medication ever been an issue for you with friends or family?

Yes.

If yes, what have people said to you about your use of medication for lupus?

Maybe your biologic is making things worse! Maybe all these medications are causing this!
quality-of-life

Lucy

Often the intention can be good, but many people don’t understand how hurtful certain comments can be. What is something you’ve been told that has made you uncomfortable or hurt?

What’s the big deal, you look fine.. you should be happy there are medications you can take.

The topic of medication can be a sore subject for many Lupus Warriors, too. Research also shows that many people that battle a chronic illness must also battle a mental health condition (such as depression or anxiety). Has the topic of medication ever been an issue for you with friends or family?

Yes.

If yes, what have people said to you about your use of medication for lupus?

Why have you gained weight.. just quit eating and then the prednisone won’t keep you awake and make you gain weight.

“It could be worse.” Reminding people with lupus that things ‘could be worse’ can sting, and can be quite dismissive of the struggles Lupus Warriors face. Have you ever been in a social situation that made you feel dismissed?

Yes, any time I try and explain what’s going on.
hospital

Want to Share Your Lupus Story?

Send us an email us at: hello@lupuscorner.com.

Stay strong Lupus Warriors! You got this!

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