8 Tips for Coping with Lupus
HealthCentral Editorial Team Dec 24, 2012 (updated Nov 13, 2013)
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Lupus is a chronic autoimmune disease that can force you to make some significant lifestyle changes. Here are some tips to staying positive and living an active, healthy life despite this often frustrating condition.
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Be open with your doctor
Being diagnosed with lupus can be frightening, but having an open conversation with your doctor can help ease fears. Having a plan, and trusting your doctor to have discussions with you about that plan if it isn’t working is a good step to lupus management. Think of yourself and your doctor as a team, and don’t be afraid to say when something isn’t working.
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Learn how to explain lupus to others
Many people do not understand lupus, so explaining your condition can minimize tension and misunderstandings. Because many times people with lupus don’t “look sick” it can be confusing for people who know nothing about the disease. It may help to first explain that lupus is not contagious or cancerous before saying that it’s a chronic autoimmune disease that can be unpredictable due to flares.
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Talk to your family and friends
Like strangers, family and friends can be insensitive simply because they do not understand lupus. Explain the basics of the disease, and be sure to let them know that lupus can flare, making you feel sick some days and better others. This can help them understand that you are not lazy or blowing them off, but that lupus is unpredictable. Having a supportive family and group of friends is very important for emotional and physical health.
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Change how you work
Having lupus doesn’t mean you can no longer work, but you may need to make some changes. Since lupus causes sensitivity to light, it might be necessary to have shields placed on fluorescent bulbs and anti-glare filters on computer screens. Having an ergonomic workstation can relieve physical stress, as well as a comfortable chair. Make sure you know your rights under the American Disabilities Act too.
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Exercise is still important for people with lupus, however, the types of activities may need to change. Fatigue can be a big issue, as well as inflamed joints. So limiting high-intensity activities - jogging, kickboxing - and replacing them with other activities, such as swimming, bicycling, yoga could help. Also, pace yourself if you feel exhausted during exercise. Just don’t give up. Talk to your doctor about starting any exercise plan.
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There is no special diet for lupus, but eating well-balanced, nutritious foods with lots of fresh fruits, vegetables, whole grains and moderate amounts of meat and fish, can help keep you healthy. Fish oil can also reduce inflammation. Make sure to cut back on high sodium, high fat and processed foods.
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Make personal time
Taking time for yourself to relax, read, listen to music, or connect with nature can serve to boost your mood and enrich your life. Don’t forget to slow down, not just when your body says you have to, but when you want to nurture yourself. This can help create balance and strength in your life, so you can live beyond lupus.