Hey everyone!....My name is Amrita...I'm 18 years old.....I was diagnosed with SLE when I was 7 and I've been living with it since...I'm so glad to have found this forum because I really need to find ppl who can feel what I feel....empathize with me.....It's not sympathy I want .....I hate that!!!....absolutely hate it!....and that's what my parents show towards me!....They make me feel like I'm abnormal....They make me feel handicapped!....Till about a year ago, I had no idea about the details of the disease or my treatment(I know it's surprising)...I never bothered coz my parents would tell me to do this and do that and not do this and not do that....But now I'm sick of being oblivious and I want to know as much as I can.....
Looking forward to your help and support.....
Welcome to our forum. You are very wise to want to educate yourself about this illness, its symptoms and medications. My daughter also hated sympathy and would often not even let people know how much she was suffering because she did not want to be pitied. As a mother, I could not agree with her and always thought that she should be up front and honest about her illness because she was experiencing a lot of anger on her job from people who did not understand her fatigue and from supervisors who did not understand her absences. I guess it is a matter of how you handle your own disease.
Your best weapon, for your own peace of mind, is knowledge. Learn as much as you can about Lupus so that you can educate your parents. That, in turn, will turn their sympathy into empathy. They are probably even more confused about the disease than you are and, from a parent's point of view, we NEVER,EVER want to see our children suffer in any way. They are probably more sad than sympathetic because their dreams for you did not include a life-long illness. Talk to them openly about what you are going through..let them read about your medications, your symptoms and all of the side effects. Most importantly, let them know that you are afraid sometimes and their pity only makes you feel worse. You need their help and their understanding...not their pity.
I regret that I did not know as much about all of my daughter's illnesses before I lost her and I wish that I could have been more helpful to her. So, please, do not be angry with your parents and do not shut them out!! At the root of all of their words and actions is their love for you and their desire for you to be healthy and happy. They just want to do whatever they can to help you achieve those things. :P
Best of Luck To You
Peace and Blessings