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What Do You Wish People Knew About Lupus?

  1. To start, it is always helpful to have someone to confide in, or better still, a safe place, whether digitally, or physically that you makes you comfortable. Daily life living with a chronic condition that brings debilitating pain can be tough! Having a checklist or note on your device that you can share with loved ones is a constructive way to share your needs and pre-plan the type of help you would expect when you are experiencing a flare. Being comfortable speaking up for yourself early and often is also very important to help others that you are around better understand your triggers and preferences!

    -Lawrence (Lupus.net Team)

    1. Living with a chronic condition like lupus means adjusting every part of life. It affects so much of the body and mind, that it can seem overwhelming. Coping is another story. You will need to communicate with friends and family so they can help you when you need it most. This might help them understand when you cancel plans, RSVP no on that invite, or why you need breaks during activities.

      -Sam, Lupus.net Team

      1. Just because you can't see my illness doesn't mean it doesn't exist. It can be scary and lonely...making you question whether to share this part of yourself with others. Most people have heard of Lupus, but may not truly understand the variances and how differently it can effect people. We at Lupus.net are here for you...a community strong! Come with questions, answers, learning...or simply to have a safe space. We are listening. ~ Marci (Lupus.net Team)

        1. It is going to be ok. The journey is long and at times so discouraging and difficult you want to quit and feel you can't move another step yes you can. Slow is ok give yourself credit for all you do not what you don't do. Self care is not selfish it is his you can be a functioning human eventually. Learn the spoon theory and use it and educate yourself and your family and friends as best you can. Accept you have a new life now and no it isn't one you choose or caused but it is a reality, you will cancel a lot and that's ok. You will not be able to do certain activities and that's ok too. We are different and have very different experiences and none of us lupies is the same health wise either. Take your time don't overwhelm yourself with Google trying to learn. Find a support group and get involved read the articles and forums and ask questions as many as you need. I've yourself first and foremost or nothing else matters.

          1. spoon theory is a great tool. For anyone looking for information on it, here's a good article: https://lupus.net/living/spoon-theory - Liz (lupus.net Team Member)

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