The Mighty Logo

26 Ways People With Lupus Describe the Disease to Someone Who Doesn’t 'Get' It

Lupus is a chronic autoimmune disease where the immune system creates antibodies that attack the body’s own tissues. It affects an estimated 1.5 million Americans. No two cases of lupus are the same. Symptoms can range from intense fatigue and exhaustion, joint pain, memory problems, skin rashes, kidney problems, lung inflammation, depression and sensitivity to the sun.

In honor of May being National Lupus Awareness Month, The Mighty partnered with S.L.E. Lupus and the Lupus Research Institute to raise awareness. We asked Facebook communities here and here: How would you describe lupus to someone who doesn’t know what it is?

These are their responses:

1. “Lupus is losing yourself. Lupus is taking it day by day. Lupus is a thief of joy and overall health. Lupus is dealing with side effects head to toe. Lupus is finding yourself wishing for the days before ‘you were sick.’ Lupus is a mystery.” — Alyssa G.

2. “Lupus is my evil twin, looking at a broken mirror.” — Lisa C.

3. “It makes you so tired, as if you are lugging around something that weighs a ton and you have to push yourself to move.” — Heather F.

4. “Lupus is a test of strength. It is learning how to live each day no matter the consequences. Lupus does not understand I need to get out of bed; it challenges you to sit up, put your feet on the floor and stand. Some days you win, some days you lose, but you never give up!” — Jennifer P.

5. “Lupus is a like a gag gift. The outside of the package looks good, but the inside of the package, which no one can see, is actually pretty ugly.” — Bernadette S.

6. “Lupus is like a chameleon. It changes daily, sometimes hourly. You never know what symptoms you will wake up with.” — Melanie M.

7. “I told my girlfriend that my body’s cleaning lady (my immune system)… started to rip the couches (my kidneys) to shreds instead making sure the trash was getting taken out (toxins when I go potty).” — Paige D.

8. “Lupus gives you strength in ways you never thought you had but takes away that strength at any possible moment.” — Valerie T.

9. “One day, I feel so great I could hug strangers. The next day I mess myself up and can’t get out of bed.” — Amanda C.

10. “Imagine the time you had the flu. Now triple the exhaustion, the pain, the sick feeling. Imagine never feeling better.” — Shonda D.

11. “I’ve heard lupus called a roller coaster ride, an invisible illness, being allergic to yourself, a medical mystery, the Great Imitator, a civil war, the ‘Cruel Mystery’ and a daily roulette game… just by my doctors and nurses alone. If my doctors feel this way, imagine how you feel going through it every day.” — Courtney A.

12. “Lupus is life-changing — and not in the good way.” — Dena D.

13.  “Explaining to someone what it’s like to have this debilitating disease is hard. We all look normal on the outside, but on the inside we’re screaming to get out of the body that is wracked daily with pain, fevers and fatigue.” — Tammy K.

14. “A long winding road with many turns and bumps.” — Nicole L.

15. “As a child, my father said I was born tired. I will never forget that. I fatigued quicker than any of my friends, have had stomach aches and vomiting since childhood. But carried on. As I got older symptoms worsened, became more complex, involved more organs. Finally a diagnosis… I’m not crazy after all.” — Cynthia L.

16. “My body thinks I myself am a virus. By doing its job in protecting me, it is in fact destroying me.”  — Amanda T.

17. “Lupus is a daily reminder that you can’t take life for granted.” — Demi L.

18. “It is like standing on the edge of a cliff. You never know if the strong wind of pain, fatigue, infection, weight gain, swelling, memory loss, etc., will blow you off the cliff and land you in the hospital.” — Wanda M.

19. “Lupus is unpredictable. It shows up whenever it wants and wherever it wants. It tries to destroy you everywhere. You only have a little time to do things before you can’t do them anymore. My hands are hurting badly from writing this…” — Sara G.

20. “Sometimes the simplest way to describe it is that I am allergic to myself.” — Tracey K.

21. “It’s watching your hair fall from your scalp and knowing there’s nothing you can do about it. It’s remembering to take medication daily. It’s staying in on days/nights to heal while your friends/family are out having a good time. It’s wondering whether or not your body will be strong enough to do things like have children. It’s hoping that the loved ones in your life will support and understand. Lupus, it’s my life.” — Amanda G.

22.“Lupus is a civil war inside your body. Both sides mean well, but they are both hurting each other in an effort to save the one thing that they are making suffer, you.” — Kelli B.

23. “I would describe lupus as a terrorist that takes your body hostage and has no mercy.” — Kristy W.

24. “It is isolating, painful, nauseating, draining, confusing, hurtful, frustrating, depressing, and overwhelming.” — Ashley S.

25. “Lupus is like a box of chocolates… you never know what you’re gonna get!” — Jane T.

26. “Lupus is hair loss, swollen hands, joint pains, but on the other side it is a good friend who teaches you to love life more than ever and who teaches you to fight against all the negativity.” — Bengu L.

How would you describe lupus to someone who’s unfamiliar with it? Let us know in the comments below.

Conversations 38