Friends & Family

What is Lupus?

Lupus is an incredibly complex autoimmune disease and diagnosing lupus can take a lot of time and many doctor visits. Patients will often get overlapping diagnosed with diseases like Rheumatoid Arthritis, Fibromyalgia etc. Lupus symptoms may have a sudden onset or progress slowly; they could be temporary or permanent, making it all the more confusing and concerning.

While men certainly can develop lupus, 90% of those affected with lupus are women between the ages of 15 and 45. The majority of those affected are people of color.
 

Known signs of Lupus

Headaches, memory loss, confusion, shortness of breath, joint pain, butterfly rash on the face, dry and puffy eyes, nausea, hair loss, persistent bladder infections, chest pain, mouth sores, fingers and toes turning white or blue, sun sensitivity, extreme fatigue, and swelling of legs, feet, and joints.
 

Why family and friends don’t always relate…

Funny enough… Most people think that if you are really sick, you should be able to see it. They expect a rash, hair loss or a big scar – something that they can look at and register that someone is sick. However, with invisible diseases (such as lupus) many times there is nothing to see.

A lupus patient’s joints may hurt to the point where pulling a sheet over the body may cause extreme pain. Perhaps the patient’s infection or inflammation has taken over their body, but no one can tell just by looking at them. Perhaps your lupus friend or family member’s liver or kidney is shutting down and they feel awful (and could be dying) but no one sees it.

Many patients are hurt and sometimes angered when they are at their weakest and met with comments like: “BUT YOU DON’T LOOK SICK”. Others report being called lazy, boring, liars, and worse.

In order to avoid these hurtful and damaging misunderstandings, please educate yourself and learn what having lupus truly means. Ask questions, seek information and try to understand.
 

Start here by reading about the spoon theory often used to describe lupus:

Read a patient’s personal story on what it is like to live with sickness or disability and
19 Things People With Chronic Pain Want You To Know.

 

…. and please watch these videos on Lupus:


 

Patient Stories

Living with Lupus


 

“But you don’t look sick”


 

Snoop Dogg on Lupus


 

Tony Braxton talks about Lupus


 

Get involved

To learn more about lupus and the physical and emotional side of living with lupus, please join our online and face-to-face support groups. Ask questions and please help us spread lupus awareness.