New to Lupus Life

I’ve just been diagnosed after several years battling the symptoms. My symptoms have been for years chalked up to laziness or indifference.

My family now knows of my diagnoses, but I’m afraid they will think I’m using my disease as an excuse to get out of things I don’t want to do. How can I explain what I’m feeling to someone who can’t understand this type if fatigue?

Also, I don’t want to look like a slacker at work. I’m a naturally cheerful and upbeat person, I don’t LOOK sick at all! How can I explain my illness without looking pathetic? I don’t want pity, just understanding that what I’ve been taking numerous sick days for isn’t just a cold or flu that I’ll eventually get over?

Jen, welcome to the site. Hopefully the people here can help you feel better. I had to go to counseling before I could accept the idea that others were going to think whatever they wanted to think about me. You and the people who are close to you understand that you are chronically ill. When I felt that my boss was questioning my illness, I took a letter from my doctor along with literature about Lupus for my boss to place in my long term file. This may not be the correct solution for others, but this worked for me.


I like to copy things I read on here or anywhere online about Lupus. Copy the “Spoon Theory” and supply everyone with some good reading material!

I agree with Rachel Sara, don't worry about what others think, they don't have a clue what its like. I've lived with this for a very long time, you have to listen to your body and take care of you first.

A friend posted a spoon theory to me..the concept is such..each day we get up with a handful of spoons for our usage. Today it takes one to get out of bed, one to get my routine in the bathroom, one to get dressed,, one to tidy the kitchen, put on the dishwasher and load of clothes, now I'm faced with just half a handful left and will have to use sparingly throughout the day with good choices or risk using my quota for the day...I hadnt given much thought to this condition , my condition until I read seemed to help me put things into perspective.

I do notice no one understands how bad Lupus makes us feel. Other people should keep their opinions to themselves.

I'm having some of the same problems. Even people who care about me have a hard time understanding what it's like to live like this. Right now, I'm working on learning to say "no" without feeling guilty. Every single time I push myself, I'm down for days afterwards.

You can't explain this illness to someone else. You need to concentrate taking care of yourself without feeling guilty.

Give people educational material about Lupus, and living with a chronic illness. Live the best way you can day by day...sometimes it's hour by hour.... Don't let anyone else define you, keep up your self esteem. Work and play the best you can. Enjoy the life we now have. Don't waste your time thinking about the things you 'can't' do. Do what you can. Good luck, and feel better.

I sooooo agree with all of you!

Hi and welcome and hope your family will be willing to read up on your desease think that’s the only way they can actually understand what your going thru is by educating themselves on it. Hate the whole you don’t look sick replies but then again they don’t know any better best of luck and God bless.

Put their names on Lupus mailing lists!!! : )

25 years and my family still thinks I’m lazy. Use to be fat from steriods but now with GP I’m thin so they can’t call me that. Brother who got family business can’t stand that my parents have helped me through the years. For me, all the literature in the world wouldn’t help, get help…get a therapist.

Hi everyone"

I must have the only family and frriends that understand. I;m sure that when I was first diagnosed my family and friends got all the info that they could to try to understand what I was going through. Got my flue shot Fri and I have been "down for two days. Went out with friends and I couldn't wait to get home. I shouldn't even gone out today I'll pay tomorrow. I'm sorry so many of you have a problem with family and friends. I guess i'm lucky. Don't worry about what others think. Take care of YOU.


Hello, simple! Take Someone from the family to your appointment and let that one person who is reliable be that person to communicate with the rest of the family , IT worked for ME !!! Hearing it hand's on from the doctor , made such a big DIFFERENCE for me and them . ..... Beverly L. P.S. and Now they know when am in a Serious FLARE , sometimes before me !!!! Best wishes xoxo

I always tell people having a flare is like having the flu. Also when I am just fatigued I tell them its like being up for over 24 hours, How do they feel?

Honey I have the same problem it hurts my family dont believe me either i just tell them that the doctors have permission to talk tothem about mesinceyou don’t believe me call them usually than leave me alone