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Getting Others to Understand Lupus Symptoms

Posted on January 10, 2019

Chronic illness is not well understood. Despite lupus affecting five million people worldwide, most people are not familiar with it and how it affects us day to day. Those closest to us may not understand the ups and downs of symptoms that come and go, like fatigue and pain. It can be difficult to have friends or family question why we do not "get better."

On MyLupusTeam, the social network and online support group for those living with lupus, members talk about a range of personal experiences and struggles. Getting others to understand is one of the top topics most discussed.

Here are some question-and-answer threads about getting others to understand :

Does anyone have a loved one tell you they don't believe you are sick? How did you handle it?

I'm home on disability, but family thinks I should be taking care of my mom's doctors appointments, shopping. Anyone else have this problem?

How do I manage my wife being here but not here?

Here are some conversations about getting others to understand:

• "Other people don't understand your pain on your bad days and how frustrating it can be."

• "I am so tired of feeling bad and talking about it all the time. People don't understand unless they have lupus."

• "Too bad most people don't understand and just think we are being wimps sometimes. "

Can you relate?

Have another topic you'd like to discuss or explore? Go to MyLupusTeam today and start the conversation. You'll be surprised just how many others may share similar stories.

Feel free to ask a question here.

A MyLupusTeam Member said:

So sorry!!! You don't deserve to be in so much pain!!! I hope you are feeling better!

posted about 1 month ago

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