Posted 6/27/2007 12:14 PM (GMT -7)
Veronica - I understand your story. I and now my daughter have lupus. My son is 5 and starting to show some oddities. He originally had neonatal lupus. I hate it when my kids say they worry I'm going to die all the time and feel the need to take care of me. Feel even worse that some day they may also have to worry about their own lives. They are just babies and it is so unfair that they have to grow up too fast. My daughter, age 10 is also bipolar w/schitzophrenic tendencies. My son age 5 is mildly autistic with dysphsia. I worry about them being labeled and not getting treatment, just like they tried to tell me I was "just depressed/stressed" and refused to treat me for years until the Lupus became deadly and finally agreed to test me.
I feel for you because you are a mom who has to watch this in two generations, perhaps three. It can be an overwhelming burden. Your daughter at least has your comfort and support. That means more than anything, I'm sure. I didn't have that from my mom some time ago, now that I do it makes a world of difference. I wish she lived closer too but there really isn't much more that she can do for me. I need to live my own life with or without the disease. The extra help never hurts though.
I had hemipeliga when my daughter was an infant/toddler. I left an abusive husband and was on my own with no support. I remember people looked at and even asked me if I was a drug addict because I was unable to use one side of my body and shook from weakness. There was no compassion from anyone and my family still expected me to take care of everyone else like I always had. It was very unreasonable and selfish on their part. Everyone, including my family and best friends, thought I was faking my illness - even though they watched me struggle like crazy for 8 years. I finally got the diagnosis and they eased off some. There isn't much guilt they can put upon me now, but they are still unreasonable and/or selfish. I just feel like I can point it out now and say no, now that I have a "valid" reason. It is unbelievable that people can act this way, but unfortunately some do.
My mom and I just talked about how it is wierd that I could have something going on with me that is potentially life threatening but still walk around looking and acting okay. It really confuses her is what I got from the conversation. Others say the same thing. Little they realize how many times I have had to make it "look" okay, just to survive, keep a job, keep friends, etc. One can't see inside my head, my heart, my kidney... no one can feel my pain, lack of strength, exhaustion. What do they expect?
I realized I don't have to be mean or angry to stand up for my rights; just consistent. They have no right to demand from me anything that I can't or don't want to give. Would I expect that from them under the same circumstances? Guaranteed I wouldn't. Perhaps suggest this to your daughter. Fair is fair. It has been hard for me to do that over the years. Boundries aren't something I understood well. It does get easier in time and people will learn to live with it and adjust. Those types of people will just have to find someone else to make all their dreams and wishes come true. She has to survive too. It is hard to be sick and think what is fair and not fair when others try to use or abuse you. I hope the in-laws will come around in time. Some never do though, their concern is themselves and their son. Maybe if they realize how their treatment of her will have an adverse affect on their son and grandchildren, they will ease off a bit. No guarantees though. I did it with my parents and it worked some. I did it with his parents and they flat out told me they cared only about their son, not me and not really their grandchild although they love their grandchild. I had to let that go.
Not sure if this helps any. Please know though people do care about you and your family and my prayers go out to you. If your daughter ever wants to talk, feel free to give her my email address: email@example.com. It helps to have friends that share similar plights. Best wishes - Kristin
Dx: Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx: Atenolol, Aricept, Flexeril, Motrin Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.