Though everyone with lupus is different, one thing many “lupies” have in common is that they’ve made changes to their lifestyle to help them better manage their condition. Many have found that adopting certain behaviors or practices into their daily routine has helped reduce symptoms or avoid major flare-ups.
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. According to the Lupus Foundation of America, there are four different types of lupus, each of which has a different cause and symptoms. Some of the most common symptoms include fatigue, joint pain, fever, photosensitivity, skin rashes and headaches.
The lifestyle changes people with lupus make vary depending on the type of lupus they have and the unique set of symptoms they experience. Of course, it’s important to talk with your doctor about any changes you want to make to your health (and keep doing any prescribed treatments you’ve already discussed). But it can also be helpful to hear what changes have made life a little bit easier for other people with lupus. That’s why we asked our Mighty community to share a “small,” but significant lifestyle change that helps them manage their symptoms and cope with lupus.
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Everyone experiences the illness differently and responds in unique ways to treatments and lifestyle changes, but perhaps some of the following ideas can be helpful as you navigate life with lupus. Let us know if you have any additional ideas in the comments below!
Here’s what our community shared with us:
1. Getting Enough Rest
“Rest!!!!! I used to run morning to night until lupus took over. I fought it for years but have realized that rest is my best friend.” – Marisa P.
“Resting in my bed all day when I have to. If I’ve overdone it a day or two before (even though I try not to) and my body goes into a flare, I take care of me and just rest.” – Jzanyt D.B.
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2. Being Open and Honest With Your Family
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“Explaining lupus to my kids. My oldest (13) will notice if I’m struggling and actually make eggs for dinner for his siblings, especially if I fall asleep. He refuses to wake me up. Even my 4-year-old will say, ‘no mom. Your lupus is bad today. Your hands hurt. Dad can make my cwocate (chocolate) milk.’ He’s even told his preschool teachers about it. We have always raised them to know we help each other as a family, but they are graciously living it.” – Tracy B.S.
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3. Taking Care of Your Mental Health
“I rest and while I rest I seek places in my mind where there are memories of better health, happiness and gratitude. I have to be mindful of my mental health.” – Linda A.R.
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4. Saying ‘No’
“Learning the word ‘no.’ I’m a people pleaser and I hate letting people down. But, I learned very fast that ‘Life in the Land of Lupus’ does not accommodate people pleasing if you are in a flare or your body just is done. I’ve learned to politely decline invitations that I know I just will not be able to push my body to attend. I’ve learned to say no to requests of my time that I don’t have the extra ‘spoons’ for. It was a really hard lesson for me, but it’s made a huge difference. Oh, and naps. Lots and lots of naps.” – Amanda C.N.
“Self-care first. I’ve learned to say no to things I would have said yes to and paid dearly for that yes!” – Susan A.
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5. Avoiding Stress
“Situations, people, or places that are sources of stress I stay away from. On the other side of that coin is that things that bring me peace and contentment I embrace.” – Gail R.
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6. Educating Others About Lupus
“Talking about it all the time! Educating those in my everyday life about lupus, if they hear about it enough, they will understand where I’m coming from, and then it takes my guilt of me taking care of me away. They begin to understand my rest days, me leaving events early, why I can’t drink, why I sleep early, all the meds, etc. And it eliminates those from my life who don’t want to understand as well, gets that negativity out of my life.” – Nicole N.
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7. Limiting Time on Social Media
“This may sound completely weird but I took myself completely off Facebook and other sources of social media. (Besides [The Mighty] and Pinterest) I was finding it too stressful with unnecessary drama and it was causing way much stress mentally and then draining me physically. My flares of lupus are bad enough without the added stress of the junk I was seeing on social media.” – Anna G.
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8. Having Groceries Delivered
“I pay a once-a-year membership fee and have my groceries delivered. It preserves the small amount of energy I have and I can expend it in happier, more productive places.” – Awyn F.
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9. Constantly Applying Sunscreen
“Not being able to be in the sun is really difficult, especially as a mother. I also am constantly reapplying and purchasing sunscreen. Since lupies need it even inside (thanks fluorescent lighting), it gets expensive!” – Courtney V.A.
“Sunscreen, sunscreen, sunscreen… even indoors!” – Kelly F.
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10. Conserving Your Energy
“Not walking when I don’t have to! Using a wheelchair where available makes me more able to move around for the rest of my day.” – Ashleigh S.
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11. Staying Out of the Sun
“I stay 100 percent out of the sun, UV clothing and when I want to look like I have a tan I spray tan. UV photosensitive reactions and flares are not worth it.” – Katie L.
“Naps and staying out of the sun and heat.” – Jackie C.
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12. Building a Community Around You
“Building a community comprised of friends, family (if you have family that understands as best as they can that you are ill), and other people with lupus or any other spoonies that you connect with regularly. Connection is so important when you are a spoonie. And not just connecting to cope or deal with chronic illness. Connecting to feel human. To laugh. To cry. To be there for them, too. Someone(s) you can count on always. Someone(s) you can laugh with. Someone(s) who will hang out with you in recliners and watch Netflix. Someone(s) that will listen, or hold your hand while you cry or endure another painful procedure. It takes a village, and not just for spoonies. We all need a village.” – Kristin M.K.
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What’s a “small,” but significant lifestyle change that has helped you manage your lupus? Let us know what you would add in the comments below!
You don’t have to go through the ups and downs of lupus alone. Connect with others in our community 24/7 to give and receive support, tips, distraction and encouragement.
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