Connect with others who understand.

sign up log in
About MyLupusTeam
Powered By
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 People React When You Tell Tr Hem You Have Lupus?

How Do People React When You Tell Tr Hem You Have Lupus?

how do people react when you tell them you have Lupus usually get a strange reaction .like Oh my God..I don't want pitty nor do I like that reaction..i was just wanted to know your experiences..

posted January 21, 2016
Last of 382 replies sign up to view previous answers
A MyLupusTeam Member

In my family, Lupus is associated with old people OR people who have had a severity of another disease so it's hard to convince my mom that Lupus isn't a death sentence. She's coming around as she sees how I'm coping. I even took her to the Rhuemy dr with me and it calmed her to see how matter-of-fact my dr was.
My husband and kids understand it but they don't really understand the full extent because I look well most days.
As for everyone else, I've learned not to take their responses personally. Most people don't know what to say. If the roles were reversed I'd probably be a part of that population. My favorite reminder is by Dr. Seuss; "Those who matter don't mind and those who mind don't matter."

posted January 21, 2016
A MyLupusTeam Member

I have several diseases and several back & neck problems. Not many people know that I'm sick , my immediate family (who don't really care or think it anything big ! A couple of my friends and some coworkers know. I think if you don't look sick then your "not sick" according to my family. I don't tell many people because I don't want them to feel pity . I wish that family was more supportive on what Lupus does to you at Any given Time . I joined this site for that very reason to talk to others going through the same thing and understanding . That is also why my Rheumatologist suggested a health counselor to help me over come the non caring family I have . My fiancé & his family are wonderful because they had a family member that had lupus and had passed away . So to all my LUPUS family all we need is each other!! God Bless you all and may you all have comfort & peace .

posted January 21, 2016
A MyLupusTeam Member

I have Lupus along with Sjogren's Syndrome, Fibromyalgia, Sleep Disorders, Osteoarthritis, Migraines, back pain, and so on and so on. When they find out I have Lupus, they just don't say anything and go on acting like I'm as well as they are. Or they act like it is nothing. And in the group I am with most of the time, they never ask how I feel or have I had a good or bad day. They just act like I'm normal like they are. My heart skips beats and at least one of them will say "Oh, mine does that". or "Oh my so and so has fibro or Lupus and she stays in the bed all the time like she thinks that is going to help", and more things like these. I come home and feel lonely. I don't want to have anyone to feel sorry for me, just to accept what is wrong with me and at least ask how I am doing from time to time. Lord help us all. He knows how we are feeling.

posted January 21, 2016 (edited)
A MyLupusTeam Member

Most people don't understand and some think you can get rid of it by changing your diet and exercising. I shared the 28 Secrets of Lupus with those important to me or who needed to know what it is and how it affects me. The hardest part for many to understand is that one day I look and feel good and the next I'm down and in pain. I pray that God enlightens others and try not to get frustrated or angry with those people that are mean or ignorant.

posted August 28, 2016
A MyLupusTeam Member


People generally fall under one of 4 categories for me: have I forgotten any?

Think if lupus you are dying. "Oh, ___, I pray for you every day." Sorry... but find that very annoying.

2. Honestly academically curious.
"What exactly is that? Etc" Asks real questions in a non-judgmental manner, wanting to learn.
Usually offer to help with anything without real pity. They are realistic, not emotional.

these people have seen you go through years and years of doctor visits, some diagnosable, many not. Nothing showing up in ur bloodwork, ur exams, ur xrays, CAT scans, etc so "you must be fine". 5 years later a diagnosis, and no one believes you. "HOW DO THEY FIGURE YOU HAVE LUPUS"? Others think you are the little boy who cried wolf. You tell them: PUNCH BIOPSY or FINALLY the BLOOD WORK.

4. This last one I had to pay close attention to some people to figure out...
They dont want to hear anything about your med stuff at all. Even if you are ready to pass out. It will bring them down from their "cloud 9' lives. And typically their problems are so mild compared to ours... but they don't want to think about that since it makes them seem shallow. So they don't want to hear our complaints or stories... HARDLY EVER, if at all.

Help at all?

posted January 21, 2016

Related content

View all
Jobs And Lupus
A MyLupusTeam Member asked a question 💭
What Are Symptoms Of Brain Fog?
A MyLupusTeam Member asked a question 💭
I Had My Sixth Orencia Infusion Today. This Is The First Time That I Broke Out With A Red Rash At The Injection Site. Is This Normal?
A MyLupusTeam Member asked a question 💭
Already a Member? Log in