@A MyLupusTeam Member please don't take this the wrong way but you might want to get accustomed now to this response and plenty of other responses that are hurtful rude or ignorant. Family or friends you are likely about to get a real big lesson in the type of people you are surrounded by. You either have a great support system or you don't. I personally have tried to educate friends and family and nobody is really interested. Bottom line in my life, it's my problem. I am verging on a divorce, I barely talk to my parents any more. I have 1-2 people I would consider to be in the friend category. You can educate people all you want and I wish you success but keep your expectations real so IF you end up with people in your life like I have it's not too much of a let down. I hope hope hope you have a support system like some of the lucky people on here however. Best wishes to you.

Mentioned Users

A MyLupus...

@A MyLupusTeam Member, Hi. I'm new on here but would like to add from Jami, it's hard for many people to understand what we go through. If they don't experience it first hand, they just don't get it. I was diagnosed in 1996 and still many around me do try but still don't always get it. Be strong for yourself and this is a good forum. I wish I found it sooner. Best wishes.

Mentioned Users

A MyLupus...

I think it is very important for you that your family members and friends understand you because you need support as every patient.
If I were you I would make copies of a simple information of the illness and I would provide to them. I think also it is their responsibility to get informed to help you. Sometimes the people prefer to ignore the topics not to hurt themselves, but anyway it is a selfish position.
Sometimes, they do not know how to approach you. I think this is related to the grieving process. In my opinion, the best is to provide information and be open to talk about the illness

People I work with tell me I don't look like I have lupus and I want to say if only you could see how I feel at times A lot of people do not understand what lupus really is and don't care unless it is them.

We can't control what others think. They should be glad they don't have to go through this. It is a lot to look "not sick" and I am trying to accept what I can't change. Not be defeated, but to create a new normal. Education is the key, the more the word is out, the more serious we will be taken.