13 Things People Who Have Lupus Wish Others Understood
Lupus is a chronic autoimmune disease where the immune system attacks the tissues because it cannot tell the difference between sick cells and healthy ones. The condition can affect any part of the body, including the skin and major organs, and can cause inflammation, pain and damage.
Because lupus is an invisible illness, a lot of misunderstanding and misconceptions surround it. So The Mighty teamed up with Lupus LA to ask our readers what they wish others understand about this disease.
Here’s what they had to say:
1. “I am not faking, and I am not trying to ‘get better.’ There is no ‘getting better,’ there is only ‘getting by.’” — Jennifer Elliott
2. “I wish [people] understood the sudden feeling of overwhelming sickness that overcomes me without warning when I have to go home early or cancel… Friends get mad or they don’t even want to be my friend any more and it hurts.” — Liv Colantro
3. “This autoimmune disease changes your life and you as a person.” — Annette White-Haas
4. “One of the symptoms of having lupus is a lack of emotional, mental and physical energy. That precious energy needs to be distributed thoughtfully in all aspects of life.” — Ritzie-Fierce Apellido
5. “When you have to cancel plans last minute, it’s because you really are not feeling well. The reality of living with lupus means plans can’t ever be set in stone.” — Denise Gallardo
6. “I will always be sick. I may have better days and worse days, but I will be sick and in pain from lupus every day.” — Tristen Wuori
7. “Lupus affects young people too. I always get ‘you’re too young to be sick like that.’” — April Hernandez
8. “I trust that you care about my well-being, [but] please trust that I keep myself as informed as possible and make the best decisions I can for my own health. It is, after all, my life on the line.” — Julie Pruitt
9. “We can’t always be strong and keep up with life every day. Sometimes we just need a break and [to] lie in bed.” —Tricia Badowski
10. “I am fighting the good fight the best that I can.” — Danna Cook Lamphere
11. “Although you may not see it on the outside, my insides are falling apart.” — Bridget Cooney
12. “I rarely ask for help but that doesn’t mean I don’t need it.” — Rebecca Albertson-Zeigler
13. “Lupus affects all of us in different ways and some days are a challenge, but we aren’t giving up”–Shantell Brown
*Answers have been edited and shortened.