themighty logo

24 'Habits' of People With Lupus

Lupus is a chronic autoimmune disease that can affect just about any organ or body part. It causes your immune system to mistakenly attack your body’s healthy tissue, leading to inflammation, pain and damage to various parts of your body.

Because lupus can affect any organ system, symptoms can be varied and widespread and may include pain, fatigue, photosensitivity, cognitive dysfunction and skin rashes or lesions. The effects of lupus are not just limited to physical symptoms. Lupus can have an impact on your mental health, lifestyle, relationships, ability to go to work or school as well as your daily functioning.

To cope with the many symptoms and side effects lupus can cause, some people may find themselves developing certain “habits” or engaging in routine behaviors that help them navigate the challenges they face. We asked our Mighty community to share one of these habits they’ve developed – positive or negative – to shed light on the many ways lupus can affect your life. Let us know in the comments below how many of the following sound familiar!

Here’s what our community shared with us:

  1. Excessive hand washing. Someone’s mild ‘head cold’ gives me three or more simultaneous infections.” – Jessica A.
  2. Shutting myself down when it comes to others! I don’t let them in because it’s easier to do it that way than to be misunderstood! Or have to explain myself for every single action in my life, that makes me tired and mentally tired! Just because I can do it today doesn’t mean I won’t pay for it for the next week! People assume because you’re doing something today things must be better… no, I just had to push harder to get here! A crazy cycle but I am thankful for the few things I can do!” – Tina L.
  3. I carry an umbrella everywhere, every day [to avoid] UV rays.” – Krista L.
  4. I don’t go anywhere without some kind of heat source. If I know I’m going to be sitting in air conditioning at work, I’ll bring myself a little heater. If I’m spending the night somewhere, I bring a heating pad. And if neither is an option, I have tons and tons of coats/jackets/layers and fingerless gloves that travel around with me wherever I go.” – Samantha J.
  5. Reading or watching videos nonstop so I don’t have to sit here thinking about feeling sick and in pain all of the time.” – Jeannine D.A.
  6. Overpacking. Just in daily life with my purse, I have ibuprofen, Tylenol, eye drops, inhaler, GasX, lidocaine/prilocaine cream, sunglasses, bandaids, chapstick, deodorant, flossers. I always have sunscreen and bug spray in the car.” – Savannah H.
  7. I guard against touching. I put my hands up or cover my hands, stomach and back. And I flinch when people touch me. It breaks my husband’s heart.” – Sarah L.S.
  8. “[Lupus has] made me extremely humble about life. Every day I am alive is a beautiful day.” – Sonny P.
  9. I work full-time during the week so I use my weekends to try and recoup and do it over again the very next week all while thinking how long can I push my body to keep doing this.” – Mindy R.A.
  10. Overcompensating for feeling so useless. I overdo it to avoid appearing lazy and feel so embarrassed when I have to say no.” – Nyx M.J.
  11. Setting timers for everything on my phone. When it’s time to get up, when my kid gets off the bus, when it’s time to take my medication, my kids’ bedtime.” – Stephanie A.M.
  12. Taking my temperature incessantly! I have low-grade fevers almost every day, with a break for a few days here and there. So, I’m super aware of any slight change in my body. I’ll take it over and over to see how the fever is progressing, or if I even have one. I take my kids’ temp all the time too. A little sniffle and out comes the thermometer. They are so great about it though!” – Tracy B.S.
  13. I coat myself in sunscreen every day multiple times a day. People say I smell like a beach year-round.” – Ryn J.
  14. I stop and read my body. Randomly and often. Used to, it was just ‘keep going ’til you can stop and rest.’ Now, it’s ‘hold up. Are you too tired? Too hot? Too cold? Does something hurt? Did you pull something? If you keep going is it gonna be OK or is it gonna be worse later?’” – Brandi W.
  15. Holding my breath against the pain. I hold my breath and push through activities like dressing or walking. I generally know I’m doing it when I get dizzy or out of breath.” – Sara C.
  16. I say ‘I’m fine’ even when I’m almost never fine.” – Lynn H.
  17. Whenever I wake up directly going to my pill bag to take my meds. Or putting on sunscreen. Also need to check in with my body, whether it’s checking in with my brain due to brain fog or my physical body to make sure my hips are OK.” – Ashley I.M.
  18. My terrible habit that I do is saying what I was able to do six months, one year, five years ago. It is not something a chronically ill patient should be doing. I am trying to break this habit.” – June G.
  19. Sticky notes everywhere. My memory sucks so I use them so I don’t forget anything. I also have a planner and password hints. The thing I hate is I forget what people are saying mid-conversation often so I usually only have one-on-one interactions on good days. On bad days, I become anti-social because it is less embarrassing.” – Jennifer S.
  20. “[I] just love to spread awareness about lupus because the people know very little about this illness.” – Cynthia R.
  21. Shoes right next to the bed, as neuropathy made it very hard to walk during the night and early morning. More, and probably most importantly, take extra good care of my family on ‘good’ days, as it is more difficult on the not so good ones.” – Nick H.
  22. Keep a bag half packed with potential necessities for quick or emergency trips: acetaminophen/ibuprofen, Benadryl, travel size hair products, a random change of clothing, deodorant, phone charger, hairbrush, etc. Lupus brain makes it hard to remember every single item if I’m stressed and in a hurry.” – Christi K.
  23. Not touching people, I dread being touched even by family members. I sincerely fear getting sick that severely where I don’t even want to shake hands with people. I probably haven’t seen 90 percent of my family since Thanksgiving because I had to start high doses of prednisone and get Benlysta infusions in January due to lupus attacking my heart and almost killing me. I’m now on methotrexate shots and still fear even common colds, it’s horrible but I have to make sure I stay as healthy as I possibly can so I don’t wind up hospitalized. It’s very isolating and lonely but I literally can’t stop myself from obsessing over this fear.” – Chelsea S.
  24. I nap. A lot. Rest helps reset my body.” – Heaven L.

What’s a habit you’ve developed because of lupus? Let us know what you would add in the comments below!

Connect with other “lupies” 24/7 on The Mighty to give and receive support, distraction, advice and encouragement. We’re here for you. To read more from our lupus community, check out the following stories:

Photo by Bryan Apen on Unsplash