Related Topics

Related Topics

Lupus

Not professional medical advice

Watch 14 videos with patients, caretakers and professionals about Lupus— listen to personal experiences, and learn helpful tips and tricks to manage your health condition. Share your health experiences to help others!

Lupus Interviewee 1
Lupus Interviewee 2
Lupus Interviewee 3
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Helpful tips

2 videos

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Treatments

2 videos

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Hardest aspects

2 videos

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Personal experiences

2 videos

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Encouragement

2 videos

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How to support

1 video

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Causes

1 video

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Resources

1 video

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Symptoms

1 video

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Interesting facts

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Other

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Helpful tips

Watch Videos
Video 1 - Transcription

One tip that I think is really important is to decide who your tribe is. Your friends and family that are the closest to you, that you want them to understand where your disease is kind of showing up and support you. So educate them. You will have close friends that don't understand how autoimmune shows up. You will have people, well-meaning, that will think you look healthy and that you're feeling fine because they can't see maybe that your heart condition is back or that your joints are hurting or that your kidneys are struggling at the time. So take some time to decide. Not everyone you meet at church, at work, at school needs to know all the gory details, but make sure you have a tribe of people that are educated that kind of understand the dynamics of an autoimmune disease and spend some time with them helping them understand how it shows up for you, what might be a signal that you're having a hard day. And that's really helpful for them because you're still trying to learn how to deal with it and they're trying to learn how to support.

Video 2 - Transcription

One of the best tips I like to give is being really clear what you say yes to and what you say no to. There's only so much time in the day and when you're dealing especially with an active lupus flare you will have limited energy and you will have to be really clear what you want to spend time doing and not doing. So give yourself permission to say no to the things that aren't serving you and then also get really clear on what the most important things are. For example if you have young children or if you have a job then that's what you're going to be making sure gets the energy and time you have and make sure that you know that it's okay to say no so that you can rest and say no so that you can exercise and say no so that you have time to eat the foods that are going to nourish you. Saying yes to everything is not helpful especially when you're struggling in an active flare.