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11-05-2011, 11:17 AM

This is my first post. I do not have Lupus but my mother was just diagnosed after being misdiagnosed for years. I can tell she's upset and nervous, but she'd never come out and say so. She lives in Florida and I hate that I'm not there to help her through this. Her "support system" includes my dad whose response to her diagnosis was "That the devil talking, you don't have Lupus." I just wanted to join a forum where I can get more info and tips. Thanks!

11-05-2011, 02:46 PM
Welcome! It's good to have you here. There are others who don't have lupus themselves, but are supporting someone who does, so hopefully you will make connections with some of them. Please read past posts and the "stickies" to get a good foundation. You might want to share this site with your mom, so she has support from other lupies. Unfortunately, it is not uncommon to have family members deny a lupus diagnosis or to be unsupportive. Your mom is really lucky to have you, and hopefully your dad will come around with time.

11-05-2011, 07:46 PM
hi and welcome,
it is good to have family members who care.
often, the support is morelike your dads.

if mum wants to join, she will be amongst others who know how she feels.
because we are going through it too.

we have members of all ages and nationalities.

so welcome to you, and a happy invite to mum.

11-06-2011, 07:07 AM
Hi J! I know you; I'm glad you decided to post. I'm in Chicago and my mom is in Florida as well; it's hard when an ill parent is far away. I went through the long distance thing when dad had cancer.

I am going guess that your dad just doesn't want to "know." It's tough to have someone close with a chronic illness. Also men (general men not all) are fixers and often feel helpness when illness strikes.

I hope you get your mom to post here.

11-06-2011, 08:29 AM
Hi j,
I used to live in the Chicago area. I'm 63 and after years and years was finally diagnosed. Your Mom is probably confused with mixed feelings - relief from knowing what's wrong and fear from wondering what's going to happen. I'm inFlorida a lot. If there's anything I can do to help; just say so.

Your Dad sounds a lot like mine. Manderson is right; most men don't like or are afraid of illness.

It's very possible that your Dad is in denial. You all should probably read the spoon theory. Steve also mentioned a letter to normal people in another thread.

But you are very welcome here; and as a Mother I say thank you for bring there for your Mom.

11-06-2011, 05:54 PM
I am so glad you have joined the forum. This will be an awesome place for you to gain support and information. I am so sorry that your Dad does not understand what is going on with your Mom. Having been the one who has cared for my dad, who has passed away, and now dealing with my mom, I know how hard it is to understand what they are going through but I hated it when other family members did not understand what was going on with my dad. Now I think I often don't have enough patience with my Mom. We look forward to getting to know you better.

11-06-2011, 08:23 PM
Hi J,
You're being wonderful and supportive for your Mom, and that will mean a lot to her. I agree with what others have said here - try to get her to join WHL.
She probably feels scared and alone. This group will let her know that she is far from alone.
Hugs to both of you,